Charleston Area MUSC Brain Tumor Support Group

    May is Brain Tumor Awareness Month.     No monthly luncheon meeting this month.        
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What's New? Submitted by Date
Brain Tumor Awareness Month coverage in the Post & Courier Brooke Davies May 1, 2012
Monthly meetings suspended Christa Lizzi April 25, 2012
Finger foods after the vigil service Christa Lizzi April 25, 2012
Brain Tumor Awareness Month Events Rachel Beard April 18, 2012
Brain Tumor Action Fair list of vendors Cinamon Kerr April 18, 2012
Brain Tumor Awareness Night at the Riverdogs Game Amy Bradley April 18, 2012
More about the Bar-B-Q to Benefit Brain Tumor Research Terrah Siwik March 8, 2012
Bar-B-Q to Benefit MUSC Brain Tumor Research Terrah Siwik February 22, 2012
Dr. Giglio to Speak at the December Meeting Christa Lizzi November 10, 2011
Report on the October Meeting Brooke Davies October 12, 2011
"Celebrating the Life and Resurrection of Eddi Davies"
(readings and music from her burial and memorial services)
Brooke Davies October 6, 20011
Eddi's Story - the Final Chapter Brooke Davies August 4, 20011
Articles from The Charleston Post and Courier Brooke Davies May 3, 2011
List of Vendors at the MUSC Brain Tumor Action Fair Cinamon Kerr April 28, 2011
Brain Tumor Research Fundraiser at the Windjammer Christa Lizzi April 27, 2011
Mayor Riley to Attend MUSC Brain Tumor Action Fair!! Rachel Beard April 26, 2011
Update to "Another Pitch for Brain Tumor Awareness" Amy Bradley April 19, 2011
Brain Tumor Action Week Updates and Flyers Rachel Beard April 14, 2011
Brain Tumor Telephone Support Group Dee Owens March 10, 2011
Jane Smith's Service Jule Smith February 28, 2011
Another Pitch for Brain Tumor Awareness Amy Bradley February 24, 2011
Four interesting and useful news items Linda Kalameja February 20, 2011
Jane Smith's Obituary Jule Smith February 13, 2011
Brain Tumor Action Week planning underway for 2011 Rachel Beard February 11, 2011
News link: Genetic defect connected with glioblastoma Brooke Davies January 4, 2011
Frank and Brinkley Announce their Engagement Frank Gary December 9, 2010
Speaker for the December Meeting Christa Lizzi November 17, 2010
American Brain Tumor Association E-News Nancy Graham November 10, 2010
Report on the November Meeting Brooke Davies November 10, 2010
Singer/songwriter David M. Bailey's obituary Linda Kalameja October 15, 2010
Report on the October Meeting Brooke Davies October 13, 2010
Report on the September Meeting Brooke Davies September 9, 2010
Exciting guest speakers in October and November Christa Lizzi August 24, 2010
News link: Promising Vaccine Being Tested at UCLA Olga Johnson August 16, 2010
Testimony opposing the proposed SC sales tax on prescriptions Julie Houston August 13, 2010
Report on the August Meeting Brooke Davies August 11, 2010
Updated the series of stories about neurosurgery in Africa Brooke Davies July 28, 2010
News story: Charleston neurosurgeon in Africa Brooke Davies July 25, 2010
Cooper River Bridge Run Team Planned Christa Lizzi July 15, 2010
Report on the July Meeting Jule Smith July 15, 2010
Brain Tumor Action Week raised over $1000.00! Rachel Beard July 14, 2010
Can Cell Phones Cause Brain Tumors? - another update Brooke Davies July 14, 2009
U. S. Senate passes Brain Tumor Awareness Month resolution Julie Houston May 28, 2010
New access to clinical trials for cancer patients in SC Brian Heins May 18, 2010
Storing and using brain tumor cells for customized treatment Brian Heins May 18, 2010
Can Cell Phones Cause Brain Tumors? - a major new study Brooke Davies May 18, 2009
Another update on the Riverdogs Game May 14th Amy Bradley May 7, 2010
Channel 4 News report: Brain Tumor Awareness and Resources Fair Brian Heins May 7, 2010
MUSC Press Release for Brain Tumor Action Week Rachel Beard April 30, 2010
Vendors at the Brain Tumor Awareness and Resources Fair Cinamon Kerr April 29, 2010
MUSC Hero Research Fair Rachel Beard April 22, 2010
Time slots when Action Week volunteers are needed Rachel Beard April 21, 2010
Alan Kalameja's Journey (on his photo gallery page) Linda Kalameja April 21, 2010
Farewell Message from Mary Monoky Mary Monoky April 20, 2010
Alan's Home-Going Service (on his photo gallery page) Linda Kalameja April 18, 2010
We are now on Facebook! Rachel Beard April 16, 2010
Purchase tickets for the Riverdogs game on May 14th Amy Bradley April 16, 2010
Another special event during Brain Tumor Action Week Rachel Beard April 13, 2010
BTAO April Newsletter (PDF) Julie Houston April 13, 2010
National Brain Tumor Awareness Month Julie Houston April 13, 2010
Hollings Cancer Center Brain Tumor Program Rachel Beard April 12, 2010
Alan's Eulogy (posted on his photo gallery page) Linda Kalameja April 7, 2010
Savannah Rae Houston's Platform Julie Houston April 6, 2010
More details about Brain Tumor Action Week Rachel Beard March 19, 2010
Another Riverdogs Game - Save the Date Amy Bradley March 18, 2010
Alan's Obituary (posted on his photo gallery page) Linda Kalameja March 12, 2010
Links to two news stories Linda Kalameja March 12, 2010
Brain Tumor Action Week Printable Flyer (PDF) Rachel Beard March 12, 2010
Brain Tumor Action Week Rachel Beard March 11, 2010
Ask the Pharmacy Professor Dr. Kathy Hogan March 11, 2010
Alan's "Home Going Service" Linda Kalameja March 7, 2010
BTOA Fall Fundraiser in Charleston Kate Watson March 4, 2010
Another news report about GBM Treatment at Duke Brian Heins March 4, 2010
Death notice for Erin Updike Mary Monoky February 18, 2010
Dr. Q's Brain Cancer Research at Johns Hopkins Cathie Petrich February 14, 2010
National Brain Tumor Society Conference Dee Owens February 2, 2010
Death notice for Daren Kerr Mary Monoky February 1, 2010
Ribbon cutting for new unit at MUSC today Brian Heins January 27, 2010
Molly's Helping Hands Andrew Knowlton January 14, 2010
MUSC plans new cancer research program Brian Heins January 14, 2010
More BTAO Videos: Jane & Jule. Kate, Terry & Angie Julie Houston January 7, 2009
"At Duke, there is hope" Dr. James Biddison December 28, 2009
Can Cell Phones Cause Brain Tumors? Brooke Davies December 28, 2009
National Comprehensive Cancer Network (NCCN) Dr. Pierre Giglio December 7, 2009
"Wrapping Up Hope" & "Erin Updike's Testimony" Julie Houston December 7, 2009
LIVESTRONG Workshop in Charleston Julie Houston December 2, 2009
CyberKnife Radiosurgery at Roper St. Francis Brooke Davies November 17, 2009
Glioblastoma Lecture at MUSC Dee Owens October 28, 2009
Eddi Davies & Darcy Whalen on "Live 5 News" Brooke Davies October 21, 2009
"Simply Divine Garden" Photo Gallery Prentiss & Brooke October 21, 2009
Photos of Eddi's "Simply Divine Garden" Prentiss Murphy October 20, 2009
SC gets $5 million to notify patients of clinical trials Brian Heins October 6, 2009
"MoM Spa" offers free spa treatments to cancer patients Brian Heins September 29, 2009
News link: UCLA study of Avastin for recurrent Glioblastoma Olga Johnson September 29, 2009
"Daisy Dash" for "Simply Divine Garden" Darcy Whalen September 8, 2009
David Bailey concert at Furman Julie Houston September 8, 2009
A "Simply Divine Garden" for Eddi Brooke Davies September 8, 2009
Kate's Story of Hope (1st installment) Kate Watson August 14, 2009
MUSC research funding again soars to record levels Brian Heins August 14, 2009
Brain Tumor Awareness Month in the MUSC NeuroNews Rachel Beard August 10, 2009
News link: 7 key genes predict brain cancer survival Brooke Davies July 15, 2009
Link to news story: MUSC to receive NIH grant Brian Heins July 14, 2009
"Eating Well for Cancer" Stacey Renouf July 8, 2009
3-D Brain Surgery on TV - links to "The Doctors" Nancy Graham June 29, 2009
Roper St. Francis Cancer Center Groundbreaking Brian Heins June 24, 2009
Link to Brain Tumor Awareness Organization newsletters Julie Houston June 22, 2009
More links to brain cancer in the news Linda Kalameja June 17, 2009
Pitch for Brain Tumor Awareness photos Amy Bradley June 15, 2009
Pitch for Brain Tumor Awareness on TV Brian Heins June 13, 2009
Vigil Service Photo Gallery Alan Kalameja June 10, 2009
MUSC receives $2 million gift Amy Bradley June 5, 2009
Brain Surgery on TV Brian Heins May 21, 2009
More New links Julie Houston May 15, 2009
New links several members May 14, 2009
In case you missed it The May meeting May 13, 2009
The Brain Tumor Vigil Service Julie Houston May 7, 2009
Pitch for Brain Tumor Awareness Amy Bradley May 7, 2009
Offsite links Brooke Davies May 6, 2009
Eddi's Story Brooke Davies May 1, 2009
Brain Tumor Action Week Rachel Beard April 8, 2009
The Governor's Proclamation Julie Houston April 8, 2009

Please share your news. To email us, click here.
Bookmark this page and come back later to see the updates.



From the Charleston Post & Courier ...
Musician Recovers from Brain Tumor
by David Quick

Local musician Mac Leaphart urges awareness of brain tumors as part of
the Medical University of South Carolina’s Brain Tumor Action Month
Click here to read the entire article.


No Monthly Meetings this Summer
from Christa Lizzi ...

Since we are about to go into summer season, and this is traditionally a slow time of year for the support group due to travel and such, I have decided to put a hold on the group for a couple of meetings. In this time, I will be trying to revamp the group format and line up some speakers and new ideas for the group. Our attendance has been waning recently, and I am looking at ways to try and boost the number of patients that attend meeting. Please let me know if this causes a problem for anyone. I will e-mail soon and let you know when group will resume.


Finger Foods after the Vigil Service
from Christa Lizzi ...

We are arranging for some finger foods to be available after the vigil. The reason we went with this rather than a dinner is because the vigil ends at 4:30, which seems a little early for dinner. Also, at this point, we only have 4 RSVP’s for the vigil service. So, we are not sure how many we will actually have. Finger food seems a bit easier when we are unsure of the numbers….


MUSC Brain Tumor Action Month
April 30- May 18, 2012

Monday, April 30 -Friday, May 4 (9 a.m. - 4 p.m.) - Display Table - MUSC Hollings Cancer Center
  Stop by the 1st-floor lobby for free educational information, buy a T-shirt, and enter the drawing (registration not required).

Monday, April 30 (11 a.m. - 2 p.m.) - Brain Tumor Action Fair - MUSC Horseshoe
  Please visit the vendors listed below (registration not required):
  1. Amedisys Hospice/Home Health Nursing, Physical Therapy, Occupational Therapy and Speech Therapy
  2. American Cancer Society Hope Lodge
  3. Apria healthcare-Durable Medical Equiment (wheelchairs, hospital beds, walkers, canes, Bedside commodes, etc)
  4. BeWell Home Care Services (Home health private aids) and Lutheran Hospice
  5. Coram Specialty Infusion Services
  6. Healthsouth Acute Rehab
  7. Integrative Cancer care
  8. Fuzzy’s BBQ
  9. Genotech Pharmaceuticals
10. Heartland Hospice
11. Heartland Sub Acute rehab in West Ashley
12. Hope House-another lodging resource in the Charleston area
13. Hospice Care of America
14. Hospice care OF SC
15. Hospice of Charleston
16. INfuscience Infusion Services
17. Interim Health Care-Home Care, HH Nursing/Aids
18. Intramed Plus Infusion Services
19. McPhail Chiropractic Services
20. Med-Caire, Inc: respiratory and therapy equipment and services, and a complete line of medical equipment and supplies.
21. MUSC Prescription Assistance
22. MUSC Education Table on Brain Tumors
23. Piedmont Hospice
24. Riverside health and rehab
25. Roper Acute Rehabilitation Hospital
26. SC Advocates for epilepsy
27. Sharon Schuler’s Designs
28. Sipada Designs
29. Southern Bling
30. Southern Care Hospice
31. T & T Original Kettle Korn
32. Taco Boy
33. The Palms of Mount Pleasant-Assisted Living, subacute rehab, Independent Living
34. Therapy 4 Seniors-outpt and Home rehab
35. Trident Head Injury Support Group
36. Raffle Table
37. The 3 Dudes Band
38. Pie Throwing area
39. Hospice Care of SC
40. Interim Healthcare
41. 41. Piedmont Hospice
42. Allcare Living Services
Mayor Riley and Mayor Swails for the ribbon cutting.

Wednesday, May 2 (noon - 1 p.m.) - "Why Seizures Occur in Brain Tumor Patients"
MUSC Ashley River Tower, Conference Room 1119 (registration required)

  A lecture presented by MUSC's Epilepsy Specialists: Gabriel Martz, M.D. and Leonardo Bonilha, M.D, Ph.D.

Thursday, May 3 (4 - 5 p.m.) - Brain Tumor Vigil Service
MUSC Hollings Cancer Center Healing Garden (registration required)

  Please join us in support of those in need of healing and in remembrance of those who are no llonger with us.

Friday, May 4 (noon - 1 p.m.) - "Nutritian & healthy Living for Brain Tumor Patients"
MUSC Baruch Auditorium, Conference Room QG103 (registration required)

  A lecture presented by Outpatient Oncology Dietitian Michael Stafford, RD, CSO, LD.

Saturday, May 12 (6:30 p.m. - ?) - "Benefit Concert & Silent Action"
Tickets are $10 in advance through etix and $15 at the door.




Thursday, May 17 (5:30-7:30) Fast Rounds:
Answers to Questions We Forget to Ask When Diagnosed with a Brain Tumor

Marriott Hotel, 170 Lockwood Boulevard, in the Crystal A Room (registration required)

There will be alcoholic/nonalcoholic beverages, along with appetizers served at this event.
Cost: Free,
Panel Speakers:
  1. Paul Falkowski: Integrative Cancer Care. How Oncology Massage Therapy is beneficial for the patients diagnosed with a Brain Tumor
  2. Gracie Atkinson, RN: Amedisys Home Health. How a Home Health nurse can decrease the number of clinic appointments you have (IV Antibiotics, wound care, lab work)
  3. Sundi Herring, American Cancer Society Hope Lodge. What resources are available at Hope Lodge.
  4. Beth Horton, Therapy 4 Seniors. Do you need Home Health Physical or Occupational Therapy?
  5. Dawn Troublefield, Chamberlin Edmonds. Should you apply for Social Security Disability and/or Medicaid? How do you do this?
  6. Polly McCann, LMSW, MUSC. I have been hospitalized. Do I need a case manager to help with Discharge needs?
  7. Pierre Giglio, MD, MUSC. Is chemotherapy a good option for a Brain Tumor?

In addition: There will be two separate tables set up in the room. The Vocational Rehabilitation Center for the State with have some resources for individuals interested in Vocational rehab and The HELP line table (Personal Emergency Response System) will have resources and information regarding this service.

Friday, May 18 (7:00 p.m.) Brain Tumor Awareness Night at the Charleston Riverdogs Game
The website to purchase seats at Joe Riley Stadium in support of Brain Tumor Awareness Night is now up and running. The date is Friday, May 18th and to purchase these tickets in our reserved section,
please click here to visit the portal link. We will be in section 206 (behind home plate) and ticket prices are discounted at $8 each. The password is 'may18'. Fun extras: Our dear friend Steve Bridges will be throwing out the first pitch at 7:05 p.m. and the game will end with a fireworks display! We are also hoping for a few of our own to sumo wrestle again this year but I'll know more as the date approaches. I hope that you can make this event as I enjoy seeing everyone and always appreciate your caring support.

Click here for a printable flyer describing all of the events above.

Click here to visit musc.edu/neurosciences/btam for more information, register for free events or buy concert tickets.



from Terrah Siwik ...
Bar - B - Q for the Cure

When: Saturday, March 24th
Time: 6pm till 10pm
Where: Pine Forest Country Club
1000 Congressional Boulevard, Summerville

BBQ buffet with all the fixings
Tickets: $10 per person
Drawings, Music, Cash Bar

All proceeds benefit MUSC Brain Tumor Research

Contact Andrea at Pine Forest for tickets
843-851-1193 x 102
Tickets will also be available at the support group meeting on March 14th,
and that will also be the last day to purchase tickets.

Click here for a printable flyer (PDF)

Mark and Terrah Siwik were featured in a newspaper article during
Brain Tumor Action Week last May, and the article is still online.

More from Terrah Siwik ...

We would like display pictures and info on brain tumor/cancer warriors at our BBQ Fundraiser. We would like a picture and a few sentences (name, age, date and name of diagnosis, where they are with it now, and how they find strength). We believe it is imperative to put the faces of brain tumors/cancers out there at the benefit.

I would need a picture and as short bio (2-3 sentences) sent to my e-mail (tsiwik@sc.rr.com) by the end of the weekend (March 12th) if they would like to participate. I really think it will help drive our cause home.

from Chrisa Lizzi ...
Dr. Giglio to Speak on December 14th

Wonderful news!
Dr. Giglio has agreed to talk to our group about the ongoing trials, results thus far, and what is on the horizon for treatment of brain tumors. Please plan to arrive on time (12:00 noon), so he can begin as he will be taking time from clinic to do this talk.

Dr. Giglio's dedication to his patients (including Eddi Davies) was recognized at MUSC when he received the Outstanding Clinician Award (presented August 25, 2009):
"Dr. Pierre Giglio directs the Neuro-onocology Brain Tumor Program in the Department of Neurosciences and is an assistant professor of Medicine. He provides dedication to his patients with compassion and is a nationally recognized expert in the treatment of malignant gliomas. Presently he is the only physician in South Carolina with this distinction. His compassion extends beyond the patient to the family providing comfort, care and humor."

This award was richly deserved! Please mark your calendar and make a special effort to attend!


In case you missed it ...
Report on the October Meeting

Paul Falkowski, Director of
Integrative Cancer Care presented "Nutrition Made Simple". He described the ICC services available in the Hollings Cancer Center and provided the following printable handouts (PDF):
Best to Bad Food Chart     "Rules of Thumb for Good Health"     "Sugar = Bad"

Cinamon Kerr, pinch-hitting for Christa Lizzi, served as moderator. We welcomed four new members: Megan Szczepanik, a new brain tumor patient, her husband Edward and her parents, John and Donna Rychwa. Also attending were Andrew Knowlton, his mother Joan, and Brooke Davies.


"Spotlight on Brain Tumors"

The May 3rd edition of The Charleston Post and Courier contains a story about a Summerville man who was recently diagnosted with GBM and is being treated at MUSC. The newspaper also includes a description of the Brain Tumor Action Week events. If you have not seen the paper, please
click here to read the articles online.


from Dee Owens, Library Manager at Hollings Cancer Center ...

Brain Tumor Telephone Support Group

CancerCare and The Brain Tumor Foundation are recruiting members for a free, 12-week telephone support group for people with brain cancer. The group will connect every Wednesday at 3 p.m. (ET) beginning this month.

Pre-registration for the group is required. To register, or to learn more, call 1-800-813-4673.

To view all of CancerCare’s free support services for people affected by brain tumors,
click here.


from Amy Bradley ...
Another Riverdogs Game - Save the Date

Please save May 20th on your calendar for a night of baseball and fellowship at Joe Riley Stadium in support of Brain Tumor Awareness Month. We will be behind home plate in section 206
(click here to see the seating chart), and ticket prices are $7.00 each. We have set up a ticket portal for ease of purchase (group password: quick).

More fun stuff: We've been able to secure the first pitch again. Our dear friend Jared Fisher will be throwing the pitch at 7:05 p.m. and the game will end with a fireworks display! I hope that you can make this event as I enjoy seeing everyone and appreciate your caring support.

This is the 3rd year that Amy has planned this event (see below - 2009 and 2010). Thank you Amy!


Four for February
Interesting and Useful News
submitted by Linda Kalameja

Please click on the links below.
Caregivers of Brain Cancer Patients Play a Key Role         Brain Tumor Activism Alert: NovoTTF-100A
February Newsletter from the National Brain Tumor Society         MUSC Community Blog


Jane Duncan Smith

from Jule Smith ...

It is with a heavy heart that I tell you that our beloved Jane passed away this afternoon - Feb.13, 2011.

She was a shining light to me, her family, and her many friends.

We thank everyone for their prayers, love and support over the past almost 4 years.

Love,
Jule & Family


(The obit below includes the funeral arrangements.)

Jane Duncan Smith, 66, of Isle of Palms passed away in her home surrounded by family and friends on Sunday, February 13, 2011 after a courageous four year struggle with brain cancer.

Jane was born on September 15, 1944 in Lancaster, SC to the late Dr. Jackson Thomas Duncan and Theo Reed Duncan. She was a graduate of Columbia College, a school teacher and Methodist Church Youth Counselor. Throughout her life, she and her family lived in Lugoff, SC, Hockessin, DE, Signal Mountain, TN, Marietta, GA and Isle of Palms, SC.

Jane loved to read, to travel and the beach. Most of all, she loved to laugh and talk with family and friends. She had a special gift that made others feel welcomed and loved. Jane will always be a shining light to those who knew her.

Jane is survived by her loving husband of 46 years, Jule Garreth Smith; her son Jay G. Smith of Atlanta, GA, his wife Celeste and their daughters Georgia and Brynn; her son James T. Smith of Sonoma, CA, his wife Sydney, and their son, Thurston; her brother, Dr. J. T. Duncan of Summerville, SC, his wife Carroll, and their children Andrea Duncan, Ian Duncan, Jena Walldorf and her husband Chad and Gabe Purser.

Family and friends are invited to visit the family on Tuesday, February 15 from 1:30-3:30 p.m. at First United Methodist Church, Lupo Hall, 21st Avenue, Isle of Palms, SC 29451. Funeral services will follow at 3:30 p.m. In lieu of flowers, donations may be made to the First United Methodist Church building fund, 21st Avenue, Isle of Palms, SC 29451 and The Brain Tumor Research Fund, Department of Neurosurgery, 96 Jonathon Lucas St., 428CSB, Charleston, SC 29425.

We know that she has passed from death into life because she loved us.



Jane and Jule (with Christa Lizzi) at the Brain Tumor Vigil Service in May, 2009
They have attended support group meetings regularly. Jane will be greatly missed.

more from Jule ...

Jane's service was beautiful. I do have a DVD of it, but it is too long to show. The eulogies were wonderful.

I may not come to meet with the group for a while because my emotions are not under very good control yet. I will try to get a note to the group for Jane loved the group so much; and looked forward to seeing everyone. Andy, his mother; Frank & Brinkley were at the service. Their presence was so special. Jane was smiling down on them.

God bless the Tumor Support group.


Brain Tumor Action Week
May 2 – 7, 2011


What is Brain Tumor Action Week (BTAW)? It is the nationally recognized collaborative effort of the brain tumor community – patients families, friends, healthcare providers, and others – to educate the public about brain tumors and to raise awareness and convince others to join in the fight for an increase in funding for brain tumor research.

MUSC Brain & Spine Tumor Program’s goals for Brain Tumor Action Week:
      1. To provide free informational materials and events to the brain tumor community
      2. To educate the public and raise awareness about brain tumors
      3. To raise funds for MUSC brain tumor research


Updated List of Events
Click here for a printable flyer describing all of the events (PDF).

      1. Hollings Cancer Center (HCC) Display Table: May 2-6, from 9am – 4pm
           a. Set up in HCC, 1st floor lobby for the entire week
           b. brochures, free bracelets and ribbons, and donations jar.
           c. enter drawing for a variety of prizes, winners to be contacted the following week

      2. Dr. Ann Kulze Lecture: “Just Say Whoa! To Cancer”: Tuesday, May 3rd
           a. Lecture begins at 5:30pm in the HCC, Conference Room 120.
           b. Reception to follow immediately after
           c. RSVP required
           Click here for a printable flyer for this event (PDF).

      3. Brain Tumor Awareness & Action Fair: Wednesday, May 4th: 11am – 2pm
                       Vendors
1. Roper Rehabilitation Hospital
2. Schuler's Designs
3. The Palms of Mount Pleasant
4. Hospice of Charleston
5. Brightstar of Charleston
6. Coram Specialty Infusion Services
7. Serenity Hospice
8. United Hospice
9. Nightingales Nursing and Attendants
10. Home Instead
11. Southern Care Hospice
12. Allcare Living Services
13. Apria Healthcare
14. Squeaks Originals
15. Lowcountry Companions
16. Intramed Plus
17. Lutheran Hospice and Bewell Home Services
18. Heartland
19. Amedisys Hospice and Home Care
20. Infuscience
21. Taco Boy
22. Happy Camper Snoballs
23. MUSC HCC/RT Medication and Patient Assistance Programs
24. Dragon Boat of Charleston
25. American Cancer Society Hope Lodge
26. Integrative Cancer Care
27. Drawing Table for Prizes
28. Kettle Korn
           a. located outdoors in the MUSC Horseshoe
           b. representatives from services that benefit brain tumor patients and caregivers
           c. food venders, jewelry venders, etc.
           d. drawing for a variety of prizes, winners to be contacted the following week

      4. Panel Discussion, Thursday, May 5th
           a. begins at 2:30pm in the HCC, Conference Room 120.
           b. led by the Neuro-Oncology Multidisciplinary Physician Team
           c. Question and answer period included
           d. RSVP required

      5. Brain Tumor Vigil Service: Thursday, May 5th @ 5:30pm
           a. Held outdors in the HCC Healing Garden
           b. A service of healing, remembrance, advocacy and hope
           c. Created by The Healing Exchange Brain Trust
           Click here for a printable copy of the service (PDF).

      6. Dr. Gabriel Martz Lecture: Friday, May 6th @ 1:30pm
           a. held in the HCC, Conference Room 120.
           b. Topic: "What Seizures are and Why they Happen as a Result of Brain Tumors"
           c. RSVP required

     7. Windjammer Fundraiser!!!: Saturday, May 7th @ 7pm
          a. We will have multiple bands (total number unknown, still booking)
          b. All proceeds go to MUSC Brain Tumor Research Fund.
          c. Silent Auction will take place during this event.
          
Click here for a printable flyer for this event (PDF).

an update from Christa Lizzi ...
I wanted to be sure you all remember the fundraising event we are planning to wrap up Brain Tumor Action Week. It is May 7th at the Windjammer at 7 pm. We will have 5 bands playing and a number of awesome silent auction/raffle items, including a week at a penthouse condo in Myrtle Beach and a week at a condo in Wild Dunes. It is $10 if you buy a ticket ahead of time on etix.com and $15 at the door if you wait until the event to purchase a ticket. Every penny goes to Brain Tumor Research. PLEASE come it will be fun and PLEASE encourage your family and friends to come. It is a really cool place right on the beach on the Isle of Palms. If you guys know anyone that may want to donate a good or service to raffle or auction please let me know. I would really love to see alot of our patients there. I think that is what makes our program so special- we involve our patients as much as possible. I think people will be more inspired to donate money when they can put faces to the people we are trying to help...... So spread the word about our event. It will be an annual event, so hopefully, our first one will be big!!

How Brain Tumor Support Group Can Help:

     1. Volunteer at our HCC Display!
     2. Help us collect prizes for our drawing and auction! (sample letter below)
     3. Most importantly – attend as many events as you can!

*Contact Rachel Beard with any questions – ph#: 843-792-6592 or email: beardr@musc.edu

Date

Dear __________________,

Over 190,000 people in the United States are diagnosed with a brain tumor each year. Brain tumors are a leading cause of tumor cancer deaths in children. Brain tumors are the 3rd most common cause of cancer death in adults within the 20-39 age range.

To date, there are No Cures for malignant brain tumors.

The MUSC Brain & Spine Tumor Program strives to bring the most innovative and promising treatments to its brain tumor patients through participation in world-class clinical trials and research that aims to improve the lives of patients with central nervous system tumors.

The first week of May is Brain Tumor Action Week (BTAW) - a nationally recognized initiative of the brain tumor community to educate the public about brain tumors and to convince others to join in the fight for an increase in funding for brain tumor research. During Brain Tumor Action Week, the MUSC Brain & Spine Tumor Program sets up many events with a goal of education, awareness, and fundraising to support our brain tumor research efforts.

We are writing you this letter in request of your assistance. Please help us make a difference! We will be holding a drawing and also an auction during Brain Tumor Action Week at MUSC and we need prizes! Anything that you can donate as a prize would be so greatly appreciated. All money raised with these items will go directly to the MUSC Brain Tumor Research Fund.

Please contact Rachel Beard, coordinator of MUSC Brain Tumor Action Week, with any questions. We thank you in advance for your time and consideration.

Sincerely,

______________________

Congratulations Frank and Brinkley!


Hey Y'all,

I'm sorry I missed all of you at yesterday's meeting. Things have been real crazy lately and I was unable to get out of the office. I have another trip to Duke this coming Monday and another MRI tomorrow. Duke will be performing some cognitive testing and the typical MRI check ups. Wish me luck!

I do have some exciting news to share though. I was hoping to share this with y'all in person yesterday, but this will have to do for now. Over Thanksgiving, Brinkley and I went back to Augusta to spend the holiday with my family. Friday night, during one of our family dinners, I proposed. Brinkley and I have been engaged for a couple weeks now, and we are having an absolute blast. As expected, our mothers are already driving us crazy about planning the wedding. Ha ha, comes with the territory I guess.

Y'all are all lovely people, and I want to take this opportunity to thank you all for being our friends. We look forward to seeing yall next month, and we hope you all have a Merry Christmas!!!

Fondly,
Frank Salters Gary


from Christa Lizzi ...
Speaker on December 8th

Wanted to let you know that Linda Kalameja has set up something for the December group. She has arranged for a hospice chaplin to come in and speak to the group about coping with loss and grief over the holidays. Her name is Janice Meyer (from
United Hospice).

Holiday Guide (PDF)
from Nancy Graham ...
American Brain Tumor Association E-News

It occurred to me when I received this monthly ABTA e-news that everyone in our group may not be receiving it. There is a wealth of information, including their publications that can be read online from a menu on their Home Page. Our folks might like to subscribe to it--it's FREE!!! However, donations are greatly appreciated.

Click here to read the November edition.


In case you missed it ...
Report on the November Meeting

Dr. Dilan Ellegala was scheduled to speak about his amazing work in Africa (
see below), but he had an urgent neurosurgery case. Christa will try to reschedule him for a meeting in 2011.

We welcomed new members Stacey Johnson and Deborah Streelman to the group, Others in attendance were Christa Lizzi, Linda Kalameja, Kate Watson, Nancy Graham, Jane and Jule Smith, Frank Gary, Brinkley Taliaferro, and Eddi and Brooke Davies.
Happy Birthday Kate Watson!
HAPPY BIRTHDAY KATE!


In case you missed it ...
Report on the October Meeting

Dr. Joseph Jenrette, Chairman of the MUSC Radiation-Oncology Department, gave an excellent presentation about the
Gamma Knife. He described the technology, the types of conditions that can be treated (including brain tumors) and the steps in the treatment process.

He also answered our questions with the assistance of MUSC staff members Jacqueline Davis RN, Gamma Knife Coordinator, Christa Lizzi and Rachel Beard.

Group members attending were Jane & Jules Smith, Nancy Graham, Linda Kalameja, Andrew Knowlton, Kate Watson, Frank Gary, Brinkley Taliaferro and Brooke Davies.


In case you missed it ...
Report on the September Meeting

We did not have a guest speaker this month, but Christa Lizzi talked about the exciting ones scheduled for the next two meetings (see the next item below) and about the fundraising team for the Cooper River Bridge Run (
also below).

We celebrated Christa's birthday, and Linda Kalameja also brought a desert in honor of Alan's birthday. Thank you Linda!

We welcomed a young brain tumor survivor named Michael Neely and his mother Dena to the group. Also attending were Nancy Graham, Prentiss Parks, Frank Gary, Eddi Davies and Brooke Davies.


Exciting guest speakers in October and November
We need a good turnout!

Christa Lizzi has scheduled two MUSC physicians and sent invitaions to Facebook members, but everyone is invited.

October 13 · Dr. Jenrette from Radiation-Oncology will be doing an informal presentation on the
Gamma Knife.

November 10 - Dr. Ellegala will be doing a brief presentation on his work in Africa as featured in the Post and Courier series this month.

Put these dates on your calendar and make a special effort to attend. Both speakers will begin promptly at 12:15, so please be on time.


Press release from Julie Houston, who testified at a hearing in Columbia on the issue of imposing SC sales tax on prescription drugs ...

National Patient Advocate Foundation Opposes TRAC Recommendation to
Impose New Tax on Life-Sustaining Cancer Medications, Chemotherapy Drugs


Local cancer care advocate, wife of patient, asks S.C. Senate Finance Committee to
consider how tax will place heavy financial burden on families, impact patient access to care

COLUMBIA, SC – The National Patient Advocate Foundation (NPAF) – a national, non-profit organization dedicated to creating avenues of patient access to health care through state and federal public policy reform – today expressed opposition to the proposal before the South Carolina State Legislature to eliminate the sales tax exemption on medications for cancer care, including over-the-counter prescriptions and potentially life-sustaining chemotherapy medications accessible to patients through their physicians and clinical points of care.

In recent [months/weeks], the South Carolina Tax Realignment Committee (TRAC) put forth a recommendation to create savings to the state by implementing a new tax of nearly 2.5 percent on prescription drugs, including essential oral chemotherapy medications sold to physicians, hospitals and cancer centers.

"In 2002, my husband was diagnosed with life-threatening brain cancer, which has since required daily oral chemotherapy treatments," said Julie Houston, a cancer care advocate and NPAF state policy liaison. "The medications my husband was prescribed, Temodar® and CCNU®, would be subject to expensive tax payments under this newly proposed sales tax exception. If this proposal were to become law, we would be forced to pay hundreds of dollars in new taxes, just for my husband to access the cancer care he needs and deserves. I am here today to say that taxing cancer patients’ care is not good policy on any level."

Houston testified before the Senate Finance Committee today to not only personally address the impact proposed taxes would have on her husband and his access to needed, life-sustaining medications, but also outline the impact it would have on patients, their families and on caregivers throughout the state. The proposed cost increases on outpatient cancer care would likely result in avoidable access to care obstacles for patients across the state of South Carolina.

Through NPAF’s companion direct patient services organization, the Patient Advocate Foundation (PAF), 92,791 patient contacts were made in South Carolina in 2009, which resulted in 1,279 cases of direct patient medication for issues related to access to care. In comparison to other states, South Carolina ranked 14th in the volume of patient inquires submitted to PAF in 2009.

"NPAF encourages lawmakers across South Carolina to carefully review this proposal and the impact this burdensome tax will have on cancer patients and their families," said Nancy Davenport-Ennis, president and CEO of NPAF. "We are committed to working with the South Carolina Legislature to ensure that policies are put into place that benefit chronically ill patients and ensure their continued access to needed healthcare services. This tax does just the opposite, and we will continue to do all that we can to make certain that this tax is fully rejected."

National Patient Advocate Foundation (NPAF) is a national, non-profit organization that is dedicated to the mission of creating avenues of patient access through improved access to, and reimbursement for, evolving therapies, therapeutic agents, and devices through policy and legislative reform at the state and federal levels. Our mission is shaped by the experiences of the patients served through our companion organization, Patient Advocate Foundation.

Julie Houston is the founder of the Brain Tumor Awareness Organization (BTOA).



In case you missed it ...
Report on the August Meeting

We did not have a guest speaker this month, but Christa told us about plans for future speakers and led a lively discussion. Frank Gary distributed copies of "Alive & Well", a CD by
David M. Bailey, who has survived glioblastoma since 1996. Kate Watson read "Death is Nothing ... All is Well", a poem by Henry Scott Holland. Also attending were Nancy Graham, Linda Kalameja, Claudia, Eddi and Brooke.


"One Brain at a Time"
by Tony Bartelme
A four part series in The Charleston Post and Courier

The lead story on the front page of the Sunday newspaper (July 25, 2010) was about the work of MUSC neurosurgeon Dr. Dilan Ellegala in Africa and his mission to teach Tanzanians his skills. Dr. Ellegala's amazing story continued in the newspaper for the next three days. The series also describes Dr. Sunil Patel's important role in the story and how MUSC has embraced the vision - helping developing countries train their own doctors. To read the articles, and also see photos and videos, click on the links below:

Part 1:
"A Doctor's Quest: Teaching brain surgery in the bush".
Part 2: "One Brain at a Time, part 2: Are medical missions doing more harm than good?"
Part 3: "Hope amid the acacias: A neurosurgeon finds love in Africa and a new job in Charleston"
Part 4: "A chorus of hope: Will a doctor's mission take hold here and in Africa?"
A summary page, including five earlier stories: "One Brain at a Time"


MUSC Department of Neurosciences Team
for the 2011 Cooper River Bridge Run

submitted by Christa Lizzi

So.... planning in advance. MUSC Department of Neurosciences is going to put together a team for the Cooper River Bridge run next year. We will be raising money for brain tumor research at MUSC. If you or ANYONE you know wants to join our team please let me know. The more the merrier and the more money we will raise!!! (Stay tuned for more details.)


In case you missed it ...
Report on the July Meeting
submitted by Jule Smith

Folks attending were: Andy, Annette, new young man-Frank Gary & friend Zac Brown; & Jane and me; with Christa leading. Actually turned out to be good exchange with no major change in conditions of Andy & Annette. Frank has Astrocytoma in Frontal.


New access to clinical trials for cancer patients now available

By Yvonne Wenger
The Post and Courier
Tuesday, May 18, 2010

COLUMBIA — An untold number of cancer patients will now have clinical trial treatments paid for by their insurance companies, under a new voluntary agreement that was five years in the making.

Legislators on Tuesday joined members of the South Carolina Cancer Alliance, insurance companies representatives and officials from the Hollings Cancer Center at Medical University of South Carolina for the announcement at the Statehouse.

Rep. Anne Peterson Hutto, D-Charleston, said the agreement will help speed the development of new cancer treatments by expanding the number of people who can take part in clinical trials.

There are 100,000 people in South Carolina who live with cancer. About 12-13 percent of the cancer patients at MUSC are treated in clinical trials, but nationally just 3-5 percent of cancer patients are in clinical trials, said Terri Matson, director of the Clinical Trials Office at the Hollings Cancer Center.

In South Carolina, 22,000 individuals are diagnosed with cancer each year.

Thirty-one states have similar agreements, either developed voluntarily or through legislative directive. Hutto was a sponsor on a bill that would have required the agreement from insurance companies, if they hadn’t reached it voluntarily.

Members of the S.C. Alliance of Health Plans are participating in the agreement, including BlueCross BlueShield, BlueChoice, Carolina Care Plan and UnitedHealthcare of the Carolinas.

Cancer patients across the state can speak to their physicians to find out more about clinical trials in their area, in addition to the treatment options available at MUSC, Matson said.

Prior to the agreement, cancer patients that were denied insurance coverage for the clinical trials mostly either paid for them out of pocket or chose to forego the treatment. Matson said appealing an insurance company decision was often a 3-4 week ordeal, and many cancer patients didn’t have the time to wait.

Read more in Wednesday’s editions of
The Post and Courier.


Banking on Success: Tumor Tissue a Death Defying Deposit

Bob Gibbs – a 40-year old husband and father of 4 boys – knows the importance of tumor tissue banking - he likely would not be alive without it. With few of those afflicted with a grade 3 or 4 brain tumor living beyond 4 years, 6-year brain tumor survivor Bob Gibbs is defying the odds because he banked his cancer tissue. This enabled the actual brain tumor cells that were hell bent on killing Bob to, instead, be used to help save his life through a ground-breaking customized cancer vaccine - DCVax® - under development by
Northwest Biotherapeutics

“What most patients don’t, but definitely should, know is that tumor tissue is a precious information source that can play a very important role in helping to fight your cancer IF - and only if - it is saved at the time of surgery, and properly stored for such use,” said Linda Powers, chairman of HealthBank, an industry leading U.S. bio bank and providing tumor banking services for patients.. “Tumor cells display dozens of biomarkers - a ‘fingerprint’ - that is unique to every patient. This is one reason why many cancer drugs only work in 20-30% of patients with the ‘same’ cancer. Saving and banking this precious tissue post-surgery can enable its use for the creation of personalized immune therapies tailored for each patient’s specific cancer profile – an exciting new realm of biotherapy that is now under development and could become the gold standard cancer treatment in the not so distant future.”

With Bob’s astounding recovery and 6 years of survival from a disease that’s effectively an immediate death sentence, he exemplifies the importance of tumor banking for the hundreds of thousands of terminally-ill cancer patients who now have hope for a longer and brighter future. Such tumor banking services for patients have been available in Japan and Germany for years, but is a new opportunity for patients in the U.S. through HealthBank.

To help expand patient knowledge and access to such options, and help educate patients on the importance of working alongside their doctors in shaping their treatment plans, Bob has established Miles for Hope (www.MilesforHope.com), a non-profit organization dedicated to raising awareness about brain and other tumor tissue banking and funds to support the cause. To view a recent related tissue banking-related press release by Miles for Hope, click here, and to watch compelling footage of Bob and his physician discussing the revolutionary DCVax treatment, click here.

To help underscore the value of tumor tissue banking and generally shed light on the subject, HealthBank offers these FAQs:

WHY SHOULD MY TUMOR TISSUE BE SAVED AND STORED?
Because information from your tumor tissue can help unlock the secrets of your particular cancer, and help you fight your cancer in multiple ways. Genetic profiling of your tumor can help evaluate your cancer and its prognosis (how it may behave), and help tailor treatments for you. Profiling services are now available for any patient who wishes to obtain them (see, e.g., Navgenics). Chemo-sensitivity testing of your tumor tissue can help identify which drugs your particular tumor is sensitive to and which ones it’s not. Such testing services are now available for any patient who wishes to obtain them (see, e.g., Vivo BioSciences). Personalized immune therapies may be produced using biomarkers from your own tumor tissue, together with your own immune cells (see, e.g., DCVax from Northwest Biotherapeutics, which is in clinical trials in the U.S. and is available under compassionate use programs in certain locations outside the U.S.).

WHAT IF MY DOCTOR OR HOSPITAL PLANS TO STORE MY TUMOR TISSUE?
Most major hospitals collect and archive a sample of each patient’s tumor tissue. This is something quite different than banking your own tumor tissue…. and there is room for both. Tumor samples stored by a hospital belong to the hospital, not the patient. You, the patient, have no right to access or use the stored sample of your own tumor. The hospital typically uses your tumor sample for its own research and/or research with drug companies (who often make large payments to the hospital for access to and use of your tumor sample and other patients’ tumor samples). Only a small sample is stored by hospitals: enough for research, but not enough to make any personalized therapeutics. The method by which the sample is stored makes it unusable for any therapeutics, or for some kinds of testing. Hospitals store patients’ tumor tissues in their Pathology Departments, in paraffin blocks – i.e., embedded in a block of wax. This destroys the condition of the tumor tissue needed to make any personalized therapeutics, or to do some kinds of testing. When tumor tissues are banked, they are flash frozen in their existing condition, which preserves their utility for virtually any kind of use. If your doctor or hospital says they need to keep all of your tumor tissue, or they refuse for other reasons to let you collect your own tumor tissue in order to bank it, HealthBank professionals can help you obtain cooperation from your doctor or hospital. Collecting your tumor tissue for banking is not mutually exclusive with the hospital keeping a sample, too: Even a tiny amount of tumor tissue can be very useful: e.g., just ½ gram can be enough for genetic profiling; just 1-1/2 to 2 grams can be enough to make some personalized therapeutics.

HOW DO I SAVE MY TUMOR TISSUE?
Step 1: BEFORE SURGERY, contact HealthBank to have a Kit sent to your doctor. Obtain your doctor’s agreement to save your tissue using the HealthBank Kit. Let us know if you need any help obtaining your doctor’s agreement. Have your doctor contact us to review the instructions for use of the Kit.
Step 2: DURING SURGERY, a nurse or technician in the operating room will simply put your tumor tissue into the Kit, seal the Kit, and hand it over to the shipping company representative, who will come to the medical center and wait to receive it.
Step 3: AFTER SURGERY, HealthBank will receive the Kit, process the tumor tissue, and freeze it in a special way so that it can be used for the types of purposes described above. If there is enough tissue, it will be frozen in multiple small portions (called aliquots), so that you can unfreeze different portions at different times and use them for different purposes.

HOW DO I USE MY TUMOR TISSUE AFTER IT IS STORED?
You simply notify HealthBank whenever you’re ready to make use of some or all of your frozen tumor tissue, and provide written instructions about where you would like to have the tissue sent. HealthBank will promptly send out the tissue in accordance with your instructions. You will be responsible for the shipping costs, as explained below.

WHAT WILL IT COST TO SAVE AND STORE MY TUMOR TISSUE?
The costs are comparable to storing umbilical cord blood stem cells. The initial processing and freezing of your tumor tissue, and first year of frozen storage, will cost a total of $1,995 plus shipping costs. Subsequent years of storage will cost $195 per year.


MUSC Hero Research Fair
Date:    Wednesday, April 28
Time:        10:00am - 2:00pm
Location:  MUSC Horseshoe

Learn how YOU can make a difference!

Over 40 research studies will have coordinators, doctors, and nurses representing their research. They will be available to answer your questions about different types of research and provide information about how to get involved. A table with information on the clinical trials that are currently offered for brain tumor patients at MUSC will be included. Volunteering for a research study is a chance to make an impact on healthcare for the entire community!

The event's activities also include free giveaways, a drawing, blood pressure screenings, nutrition handouts, and body composition analysis - a chance for you to learn more about your personal health!

For more information about the event, contact the SUCCESS Center at 792-8300, or e-mail success@musc.edu.
Sponsored by the South Carolina Clinical and Translational Research Institute (SCTR)


Farewell Message from Mary Monoky

I would like to acknowledge the guidance and support of Elena Bell who had acted in the role of facilitator for the Brain Tumor Support Group when no one else was available. Elena primarily works with individuals who are undergoing bone marrow transplants at the Hollings Cancer Center. It has been a real challenge for her to juggle competing demands as the only oncology social worker at Hollings where hundreds of patients receive care each week and to keep in touch with the individuals and families regarding brain tumor support group. I understand that the Brain Tumor Support Group was founded by Christa Lizzi who had left MUSC for a short time but has recently returned and is excited to have her group back. As a member of the neuroscience team I'm sure Christa's department will support her active participation with the group.

The following is what I had planned for the April meeting but due to the number of guests/speakers this material was not covered. I am sending out this email with two attachments. The first is the questionnaire discussed below and the second is a reference guide to various Charleston Cancer Support Services.
Click here to open this file.

As a final interaction with the group I had planned to facilitate a discussion on communication focusing on identifying strengths at our April meeting. When illness occurs it doesn’t just impact the identified patient, a serious diagnosis impacts the entire family system.This self identification exercise was intended to be a co-created gift for each of you, something that you will be able to refer to in the future. Attached you will find a questionnaire for each of you to complete, (identified patient, care giver, or family/friend). Once you’ve followed the directions you should be able to visualize your strengths more clearly and see what resources you already have. If you find some areas to be lacking, perhaps you might select one topic to address this week. Print out this road-map and use it as a guide to help navigate the messy and sometimes overly complicated world of modern medicine. Click here to open this file.

It has been a privilege and an honor to share these past months with each of you.

Be Well,
Mary Monoky, MSW
Just4mm@gmail.com


We are now on Facebook!

Christa Lizzi has created the MUSC Brain Tumor Support Group Page on Facebook. Once you become a member of facebook (if you aren't a member already), just type "MUSC Brain Tumor Support Group" into the "Search" box at the top of the page and the link will pop right up.


An update from Julie Houston:

"We just got word from Priscilla Hanley with Senator Collins that the Senate passed the National Brain Tumor Awareness Resolution last night (Wednesday, May 26) by unanimous consent." To send a message of appreciation to Senator Collins,
click here.


S. RES.537 / H.RES.XXXX
Designating May 2010 as
"National Brain Tumor Awareness Month:
IN THE UNITED STATES SENATE /
UNITED STATES HOUSE OF REPRESENTATIVES

RESOLUTION

       Whereas 40,000 Americans are diagnosed with primary brain tumors each year, and 150,000 more are diagnosed with metastatic brain tumors that are the result of cancer spreading from another part of the body to the brain,

       Whereas brain tumors are the leading cause of death from solid tumors in children under the age of 20, and are the third leading cause of death from cancer in young adults ages 20-39,

       Whereas brain tumors may be either malignant or benign, but can be life-threatening in either case,

       Whereas 600,000 Americans are living after a diagnosis of a brain tumor,

       Whereas treatment of brain tumors is complicated by fact that there are more than 120 different types of tumors,

       Whereas treatment of brain tumors presents significant challenges because of the location in an enclosed bony canal, the difficulty of delivering treatment across the blood-brain barrier, the obstacles to complete surgical removal of the tumors, and the serious edema that results when the blood-brain barrier is disrupted,

       Whereas brain tumors have been described as a disease that affects the essence of "self,"

       Whereas brain tumor research is supported by a number of private non-profit research foundations and by institutes at the National Institutes of Health, including the National Cancer Institute and National Institute for Neurological Disorders and Stroke,

       Whereas important advances have been made in understanding brain tumors, including the genetic characterization of glioblastoma multiforme, one of the deadliest forms of brain tumor,

       Whereas basic research advances may fuel research and development of new treatments, including targeted therapies,

       Whereas there still remain daunting obstacles to the development of new treatments and there are no strategies for screening or early detection of brain tumors,

       Whereas there is a need for greater public awareness of brain tumors, including the difficulties associated with research on these tumors and the opportunities for advances in brain tumor research and treatment,

       Whereas May, when brain tumor advocates nationwide unite in awareness, outreach, and advocacy activities, would be an appropriate month to recognize as National Brain Tumor Awareness Month,

       Now, therefore, be it Resolved, That

    (1)     it is the sense of the Senate/House that May should be established as National Brain Tumor Awareness Month; and
    (2)     continued strong public and private investment in brain tumor research will be necessary to advance research and
              improve those treatments available to Americans diagnosed with brain tumors.

Please use the links below to contact your congressmen,
tell them your story, and urge them to support this resolution.

Write Senator Graham    Write Senator DeMint    Write your Representative



HCC Brain Tumor Program

The Hollings Cancer Center site contains a wealth of helpful information, including
links to more details about related topics.   To explore this page, please
click here.


Savannah Rae Houston's Platform:
Brain Tumor Awareness




Julie Houston's daughter Savannah, "Miss Carolina Foothills Teen 2010", is a candidate for "Miss
SouthCarolina Teen", and she is using her platform to help her family raise brain tumor awareness.

Please click here to read the platform in her April newsletter.


from Amy Bradley ...
Another Riverdogs Game - Save the Date

"I wanted to remind you that May is National Brain Tumor Awareness Month, and just like last year
(see below), I would like for us to get together at a Riverdogs game for fellowship and fun! Please save the date: On Friday, May 14th at 7:05pm, the Charleston Riverdogs will take on the Augusta Greenjackets. There are post-game fireworks on this night as well!"

"James Robert Jimmy-Jam Brad Bradley won't be throwing out the first pitch like last year, but I did attach the news story so you can watch his awesome pitch and laugh at my interviewing skills! :) Hope you all can make it!" Click here to see the video.

update from Amy Bradley ...
We have secured seating in section 206 just behind the dugout. For a view of the stadium chart, click here
Here is the link (with our group password) to buy tickets: Online Ticket Purchasing Portal (Password: riverdogs99)

another update from Amy ...
It's official! Gunter & Steve from Low Country Diagnostics (where my husband works for those who don't know) will be duking it out for brains in their Sumo Wrestler outfits on Friday, May 14th! Gunter was just accepted into medical school to become a pharmacist and Steve is a pharmacist who graduated from UNC, a father of three and a manager at Low Country Diagnostics. Good luck guys and we'll all be cheering you both on! :)


BRAIN TUMOR ACTION WEEK!
May 3 - 7, 2010
MUSC Hollings Cancer Center (1st floor)
Organized by the MUSC Neuro-Oncology Program

Update from Rachel Beard (posted 07/14/2010)...

I just wanted to share with everyone the exciting news that our fundraising efforts during this year's Brain Tumor Action Week have officially exceeded $1,000!!!! We received another generous donation a couple of weeks ago for $200, which brings our total to $1,121.75!!! I just want to thank you all again for all of your help and support during Brain Tumor Action Week, and I can't wait to see what we will be able to raise next year!

FREE brochures about brain tumors, treatment options, financial assistance,
advice for caregivers, brain tumor organizations & fundraisers, etc.
FREE Brain Tumor Awareness Bracelets
Enter a raffle for a chance to win a gift certificate to a Charleston restaurant!


Volunteers are needed to staff the display table from 9:00 am to 4:00 pm each day. If you
would like to help, please
click here to e-mail Rachel Beard (or phone 843-792-6592).
As of April 21st, the following time slots have not yet been filled:
Monday Tuesday Wednesday Thursday Friday
9am – 4pm 9am – 12pm 11am – 1pm
3pm – 4pm
9am – 2pm
3pm – 4pm
9am – 2pm

Please spread the word. To open a PDF file containing a printable flyer, click here.

Please join us for 4 special events during Brain Tumor Action Week

Special Guest Speaker: Dr. Ann Kulze - BIO (PDF file)

"Just Say Whoa! to Cancer"
Wednesday, May 5, 3:00 pm
in the Hollings Cancer Center Conference Room (#122)
Visit Dr. Ann's web site: www.DrAnnwellness.com

Brain Tumor Awareness & Resources Fair
Thursday, May 6, 12:00-2:00 pm
in the MUSC Horseshoe
Click here to watch the Channel 4 News report.
List of vendors:
  1. HealthSouth: Inpatient acute rehabilitation services
  2. Roper: Inpatient acute rehabilitation services
  3. Lowcountry Companions: Home care services (bathing, dressing, meal prep, transportation to doctor appt, etc)
  4. Comforcare: Home care services (bathing, dressing, meal prep, transportation to doctor appt, etc)
  5. Hospice of Charleston: hospice, respite, palliative care, comfort care
  6. Winyah/Amedisys Hospice: hospice, respite, palliative care, comfort care
  7. Heartland Hospice: hospice, respite, palliative care, comfort care
  8. Apria: durable medical equipment (wheelchairs, canes, bedside commodes, etc)
  9. Paul Falkowski: nutrition and massage (there will be a massage table there also)
10. Prescription Assistance: various programs to help with costs of medications
11. Brain Injury Group: preventative and treatment services for individuals with brain injuries and brain tumors
12. Education Table (educational resources for Brain Tumors)
13. Clinical Research table
14. Heartland sub acute: inpatient sub acute rehabilitation services
15. Sandpiper: Inpatient sub acute rehabilitation services, they will also be bringing information about their new outpatient rehabilitation services
16. Sticky Fingers: Food for sale!
17. Kettle Corn: Food for sale!
18. Drawing/Donation Table: For $2.00, you can enter a drawing to win great prizes such as one night stay at Francis Marian Hotel with Breakfast for two, 10 hours of free home care, A salon visit with a cut, style and color, Kickin Chicken gift certificates, and more! You can also make a tax deductible donation at this table. You can designate it to go to Brain Tumor Clinical research or Brain Tumor patient education.

Brain Tumor Vigil Service,
"A Service of Healing, Remembrance, Advocacy and Hope"
Thursday, May 6, 3:30 pm
in the Hollings Cancer Center Healing Garden

A Discussion of Symptom Management
for Brain Tumor Patients, their Families and Caregivers
presented by Dr. Paul Rousseau
Friday, May 7th - 12:00 noon
(lunch provided, space limited - please RSVP)
For more details, click here.

To open a PDF file containing a printable calendar for the entire week, click here.
The calendar (with links to additional details) is also on the HCC site: click here

The entire week is also described in the MUSC press release below.

For Immediate Release
Contact: Rachel Beard at 843-792-6592 or beardr@musc.edu
Date: April 20, 2010

MUSC DEPARTMENT OF NEUORSCIENCES PRESENTS:

BRAIN TUMOR ACTION WEEK – GO GREY IN MAY!

May 3 – 7, 2010 – The Neuro-Oncology Program at the Medical University of South Carolina, will be hosting several local events in honor of National Brain Tumor Action Week. This is a nationally recognized collaborative effort of the brain tumor community – patients, families, friends, health care providers, and others – to raise awareness and to advance life-saving brain tumor research. All events are open to the public.

Beginning May 3rd, there will be a display set up in Hollings Cancer Center offering free brochures, free brain tumor awareness bracelets, $2 raffle tickets for enticing prizes and a donation center where you can make a tax-deductible contribution to support brain tumor research and education. Wednesday, May 5th at 3PM, Dr. Ann Kulze, a nationally recognized expert and motivational speaker on nutrition, healthy lifestyles, and disease prevention, will be speaking at Hollings Cancer Center in room 120. Her speech titled "Just Say Whoa! To Cancer" will focus on the latest in cancer research, health and nutrition. On Thursday, May 6th from 12pm – 2pm, there will be an Awareness & Action Fair in the MUSC Horseshoe. Multiple vendors will be set up outside of the Education Library with information for the brain tumor community on research, rehabilitation, patient assistance, medical equipment, free massages, food venders, and more. Also on Thursday May 6th at 3:30pm, there will be a Vigil Service in the Hollings Cancer Center Healing Garden, in support of those in need of healing, and in remembrance of those who are no longer with us. The final event on Friday, May 7th at 12pm in room 419 of the Clinical Sciences Building will be a discussion of symptom management for brain tumor patients and their families and caregivers. This important discussion will be led by Dr. Paul Rousseau, MD, FACP, FAAHPM, who is the Medical Director of the Palliative and Supportive Care Program and Associate Professor of General Internal Medicine and Geriatrics at MUSC. Please RSVP to Rachel Beard at beardr@musc.edu if you plan to attend this event.


In case you missed it ...
Ask the Pharmacy Professor

At the March meeting, Dr. Kathy Hogan, from the Hollings Cancer Center Pharmacy and the SC College of Pharmacy, answered questions regarding medications, side effects and drug interactions. She also suggested a helpful online resourse for dealing with the confusion of managing medication schedules -
MyMedSchedule.com. If you have additional questions for Dr Hogan, you may click here to send her an e-mail.



Alan Kalameja

Alan's "Home Going Service" will be held Friday, March 26, 2010 at
10:00 a.m. at the Lightsey Chapel at Charleston Southern University.

Alan's obituary has been posted on his photo gallery page.
It will appear in the Post and Courier a little closer to the day of the service.
(A link to it will be posted here when it becomes available.)

Alan and Linda have attended our support group meetings regularly, and Linda added:
"It is my intention to attend Wednesday's Support Group Mtg. We will catch up then.
Thank you for your thoughts and prayers."

Linda did come to the meeting to share her feelings and memories.
Alan's positive attitude and deep faith in God were an inspiration
to all of us. He will be missed tremendously. If you have memories
of Alan that you would like to share, we would be honored to post them.

We extend our deepest symphathy to Linda and the other members of Alan's family.




from Kate Watson ...
BTOA Fall Fundraiser in Charleston
Please Volunteer to Help with the Silent Auction

All of the other information posted on this web site should underscore for all of us the importance of funding for research, including clinical trials, and the dissemination of discoveries that actually have a positive outcome in the survivability and quality of life for all brain tumor patients.

That is why the BTAO (
Brain Tumor Awareness Organization) is planning a fall fundraiser in Charleston (date, time and location TBA). Julie Houston and Kate Watson need volunteers to help with this project - a Silent Auction. Some of the things that we can all do include lining up sponsors, collecting auction items, helping with the set-up and clean-up, helping with publicity, etc.

In addition to the Silent Auction itself, we also need ideas for a "Charleston package" to lure out-of-towners (e.g., busy doctors and their spouses) to travel to the "Holy City". The package might include special tours of the city that would appeal to both husbands and wives, group discounts at hotels and restaurants, etc.

Funding for brain cancer research is small compared to that for other more common types of cancer, because the number of cases (and survivors) is smaller. The BTAO is working to encourage people to regard a brain tumor, not as a "death sentence", but rather as a "chronic disease that is manageable". Help make this a reality not only for us, but for future generations. Please let Kate know what you can do to help - click here to email Kate (or she "will call you until you surrender and become a volunteer for this event").


Erin Updike

We extend our deepest symphathy to Erin's family.
Please click here to read the death notice in The Post and Courier.
A Guestbook is provided for friends to leave condolences or share memories.

Erin's radiant smile was a beacon of hope at many of our meetings. If you have
memories of Erin that you would like to share, we would be honored to post them.

From Kate Watson:   "Erin was a beautiful person with a lovely soul! She
blessed all who knew her and we thank God for letting her cross our paths."

From Rachel Beard:   "Erin was such a joy to be around. She and her dad were
so wonderful last year with all their help for the Action Week activities, and I really
enjoyed the time I got to spend getting to know both of them. Erin will certainly be missed."




Dr. Q's Brain Cancer Research at Johns Hopkins
Are Stem Cells the Cause - or the Cure?

An old friend of Eddi's from her high school in Baltimore recently sent us an article from an AARP magazine about the amazing life and work of Dr. Alfredo Quinones-Hinojosa, who was once an illegal immigrant and migrant farm worker, but who is now a famous neurosurgeon and research scientist. "Dr. Q" (as he is known at Johns Hopkins) believes that stem cells may be the key to unlocking the mystery of why brain tumors form, and an important clue for finding a cure. To read the entire article online, 
click here. Dr. Q will be speaking to the "Baltimore Women's Forum" on Tuesday, March 2nd. His topic:"The Latest Trends in Brain Stem-Cell Research"


Living With a Brain Tumor
A Conference for Patients and Families
Washington, DC     March 19-20, 2010
National Brain Tumor Society


Attend the Friday evening performance by inspirational singer/songwriter David M. Bailey
Learn more about the latest research on the causes, treatments, and coping strategies;
Make connections with others in the brain tumor community; Take part in brain tumor advocacy;
Click here for more information, including the Saturday agenda and registration.


Daren Kerr

We extend our deepest symphathy to Daren's family.
Please click here to read the death notice in The Post and Courier.

A Guestbook is provided for friends to leave condolences or share memories.
The family is establishing a "family assistance and medical memorial fund in
Daren's name". More details will be posted here as they become available.




MUSC opens new unit for brain surgery
Unit highlight is a device to treat complicated tumors
Ribbon cutting: January 27, 5:00 pm, in the Main Hospital

Background: Radiation Oncology and Neuro-sciences now have a non-invasive device that will allow them to treat patients with benign and malignant tumors in the head and neck using a precise dose of radiation.
Elekta's Leksell Gamma Knife Perfexion delivers a single dose of ionizing radiation to a predetermined target set by advanced imaging. Patients with brain metastases, astrocytomas, ateriovenous malformations, acoustic neuromas, meningiomas and pituitary tumors are candidates for this technology.


Molly's Helping Hands

At the January meeting, Andrew Knowlton told us how grateful he is to "
Molly's Helping Hands", a new organization that provides assistance to cancer patients free of charge. These volunteers raked and bagged all of the leaves from a huge oak tree in Andrew's yard.



Click here to see more photos
(and click on each one to enlarge it).


NEW MUSC CANCER RESEARCH PROGRAM AIMS TO CREATE
NEW THERAPIES AND BOOST SOUTH CAROLINA ECONOMY


$10 Million Center of Economic Excellence in Lipidomics, Pathobiology and Therapy on Leading-Edge of Research

January 13, 2010, Charleston, SC – The Medical University of South Carolina (MUSC) will establish a Center of Economic Excellence (CoEE) in Lipidomics, Pathobiology and Therapy. The goals of the new center include creating new drugs that would extend the lives of patients with cancer, diabetes, and other inflammation-related diseases, while boosting South Carolina’s economy with spin-off companies and industry investment in discoveries.

Leading the effort for the center were Lina M. Obeid, MD, MUSC Professor of Medicine; and Yusuf A. Hannun, MD, MUSC Director of the Division of Basic Sciences, Chair of Biochemsitry, and Hollings Cancer Center Deputy Director.

“Drs. Hannun and Obeid are internationally recognized pioneers in this field,” said MUSC President Raymond Greenberg, MD, PhD. “With the new center, we envision building a program that will attract the best investigators from around the world, giving South Carolina a strategic advantage in new discoveries that will benefit a wide range of patients.”

Lipidomics is the study of a class of molecules in the human body that store energy and are involved in providing structure to cell membranes. Some lipids act as messengers signaling information within cells or between cells and tissues. Lipid cell signaling can regulate cancer cell growth and death.

“This is a cutting-edge program focused on lipidomics from bench to the bedside. It incorporates research and investigators from MUSC with expertise in cancer, aging, inflammation, cardiovascular and neurodegenerative disease,” Dr. Obeid said. “The COEE will catapult South Carolina to a clear leadership position in this field.”

The CoEE program was established by the South Carolina General Assembly in 2002, funded with South Carolina Education Lottery proceeds. The legislation authorizes the state's three public research institutions, MUSC, Clemson University, and the University of South Carolina, to use state funds to create CoEEs in research areas that will advance South Carolina's economy.

Each CoEE is awarded from $2 million to $5 million in state funds that must be matched dollar-for-dollar with non-state funds. The program also supports CoEE endowed chairs, who are world-renowned scientists that lead the CoEEs. By investing in talent and technology, the CoEE program is designed to fuel the state's knowledge-based economy, resulting in high-paying jobs and an improved standard of living in South Carolina. For more information, visit www.sccoee.org.

About Hollings Cancer Center
Hollings Cancer Center at the Medical University of South Carolina is a National Cancer Institute-designated cancer center and the largest academic-based cancer program in South Carolina. The cancer center and has more than $35M in cancer research funding and more than 200 people are currently participating on a cancer clinical trial at HCC.

Hollings Cancer Center offers state-of-the-art diagnostic capabilities, therapies and surgical techniques and has multidisciplinary clinics that involve surgeons, medical oncologists, radiation therapists, radiologists, pathologists, psychologists and many other specialists seeing patients under one roof. Multidisciplinary care is provided in disease specific clinics such as thoracic, breast, head & neck, genitourinary, gastrointestinal, hematological, and pediatric cancers. For more information, please visit www.hcc.musc.edu.


"At Duke, there is hope"

Brian Heins sent us a CNN report about a new treatment for GBM at Duke. Click here to see the video and read the article.

Jay Biddison, who is one of our best friends in Baltimore, recently mailed us a copy of an article about "groundbreaking Duke investigations of new treatments" for glioblastoma and "important studies" that are showing "unprecedented promise". This article may be found online in the Duke Medicine Review (go down to page 14 in this PDF file).

For more information about brain tumor research and treatment at Duke, visit the Preston Robert Tisch Brain Tumor Center site, watch the YouTube video, and follow some of the other links on that page.


Can Cell Phones Cause Brain Tumors?

This is an issue that has sparked a lot of discussion and disagreement. Here is another update - two more reports from USA Today (posted on 07/14/2010):
San Francisco cellphone radiation law raises health issue
No strong evidence points to cellphones as brain tumor risk

Both CNN and USA Today previously reported on a major new study. Links to both articles are given below (posted on 05/18/2010):
Study fails to end debate on cancer, cell phone link
Study: Cellphone-brain cancer link inconclusive

Here are the links to two earlier articles with different opinions (posted on 12/28/2009) :
Maine to consider cellphone cancer warning
    Study Finds 'No Observable Effect' of Cell Phone Usage on Brain Tumor Incidence


National Comprehensive Cancer Network

"A not-for-profit alliance of 21 of the world’s leading cancer centers, dedicated to improving the quality and effectiveness of care provided to patients with cancer. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops resources that present valuable information to the numerous stakeholders in the health care delivery system. As the arbiter of high-quality cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers. The primary goal of all NCCN initiatives is to improve the quality, effectiveness, and efficiency of oncology practice so patients can live better lives."

The mission statement above is copied from the NCCN site. The site contains a wealth of information for both oncologists and patients. Dr. Giglio gave us a copy of the NCCN guidelnes for treating brain tumors, but it is a copyrighted document, so we cannot post on our web page.

Click here to link to the NCCN site.


BTAO Videos

more from Julie Houston and The Brain Tumor Awareness Organization...

"I want to share with you our fundraising campaign ... Wrapping Up Hope to continue the work and develop programs of support for brain tumor families and their caregivers."

After our November meeting, Julie interviewed Erin Updike.

More BTOA testimonies on YouTube:     Jane Smith      Jule Smith     Kate Watson     Terry and Angie


from Julie Houston ...

The
Lance Armstrong Foundation will be in Charleston, SC, December 12 for a grassroots advocacy workshop!

This free interactive workshop will equip you with tools to get others involved and take action together in the fight against cancer. Come and connect with other cancer advocates and gain the skills to help make cancer a priority at the local, statewide, and federal levels.

During this session, you will learn how to:
        - Choose issues to work on within your community
        - Create effective action plans
        - Share your story
        - Persuade decision makers

WHO: ANYONE AFFECTED BY CANCER- Feel free to invite others and bring a friend!

WHEN: Saturday, December 12, 2009 : 10:00 AM – 4:00 PM

WHERE: Berkeley County Library – Daniel Island Branch, 2301 Daniel Island Dr., Charleston, SC, 29492

Through LIVESTRONG Groups, The Lance Armstrong Foundation is uniting people in communities across the world to make cancer a global priority. These workshops will give you a chance to gain new skills on how to unite people in your area to fight cancer and remind our decision-makers that people in your community care about cancer and demand change.

To register for this workshop, please click here: www.livestrong.org/LIVESTRONGWorkshop


In case you missed it ...
CyberKnife Radiosurgery
at Roper St. Francis Cancer Center

At our November meeting, Laurie Lybrant, Coordinator of the CyberKnife Program at Roper St Francis, described the use of this technology for treating brain tumors. Her presentaion included the "behind the scene" steps in develping a patient treatment plan using the advanced imaging and software tools. She then conducted a "virtual tour" of the CyberKnife Control Room and the CyberKnife Treatment Room, and described the procedure experienced by the patient. For more information, please follow the links below:
CyberKnife Radiosurgery at Roper St. Francis      Accuray CyberKnife System

Another new alternative to conventional neurosurgery is available at MUSC:  
Laser Brain Surgery.


Adult Glioblastoma:
New Approaches to a Challenging Diagnosis


Date/Time: October 29 11:00 a.m.
Location: Storm Eye Institue, 8th Floor Auditorium
Contact: Rachel Beard 843-792-6592, email:
beardr@musc.edu

Please join us this Thursday, October 29 for a lecture titled: "Adult Glioblastoma - Best Approaches to a Challenging Diagnosis", that will be presented by our guest speaker, Dr. Jeffrey Raizer, the Director of Medical Neuro-Oncology at Northwestern University. The goal of this lecture is to provide information that will help improve competence in the treatment or management of adult patients with glioblastoma.

No RSVP is necessary, and anyone who is interested in learning more about Neuro-Oncology is welcome to attend! If you have any questions, please call Rachel at 843-792-6592. We hope to see you there!


SC gets $5 million to notify patients of clinical trials

COLUMBIA, S.C. (AP) -- The University of South Carolina is getting a nearly $5 million grant to set up an Internet network to notify seriously ill people about clinical trials. The grant will be paid over two years and is expected to operate at no cost to patients. USC professor Jay Moskowitz says clinical trials are often the last hope for seriously ill patients.

The State reported Tuesday that USC's Center for Healthcare Quality will operate the network which will allow sick people to volunteer for clinical trials and get notification of new research related to their condition. The network will have built-in security checks to protect patient privacy. USC will work with the Medical University of South Carolina in Charleston and Clemson University on various aspects of the research network.


"MoM Spa" offers free spa treatments to cancer patients

(Mt. Pleasant, SC) If you are sitting at a table with three people, statistics say that one of you will get cancer. MoM Spa in conjunction with the ASCEND (Anne Scandalious Cancer Ends Now) Foundation is working valiantly to bring these statistics to light and in the process nurture those who are battling this devastating disease. On October 14th from 9am – 7pm, MoM Spa celebrates "A Day of Giving" and invites women undergoing cancer treatments, along with survivors, to enjoy a free spa treatment. “Healing begins inside with love and nurturing touch,” says MoM Spa owner Christy Schachte. “We want to do everything we can to help begin the healing process in these women who are bravely battling for their lives.”

The
ASCEND Foundation was created in honor and memory of a local wife and mother, Annie Scandalious, a friend of Christy’s, who sadly lost her battle with breast cancer in 2001.

Her story begins in June of 1998, Annie, as she was known to her friends and her devoted husband Nick, welcomed the arrival of their long-awaited child, daughter Anna. Sadly, just a few months after Anna’s birth, Annie noticed a “nodule” which, at first, was presumed by doctors to be “normal breast changes” that occur with breast-feeding. Three months later Annie and Nick heard those dreaded words: “It’s cancer.” A remarkably aggressive cancer – it was Stage IV.

For the next two years, Annie and Nick traveled to leading Comprehensive Cancer Treatments across the United States and out of the country in search for a way to beat the disease.

It soon became abundantly clear that this was not just Annie’s disease; it was Annie’s, Nick’s, and Anna’s together. Nick spent thousands of hours researching, traveling to see doctors and working on their Whole Foods diet. Through their research, they learned that nearly 600,000 American lives are taken by cancer each year. That is the equivalent of six 747 commercial airplanes crashing, killing everyone on board, every day of every year.

Annie battled for 747 consecutive days. It was her full intention to reach out to people across America to inform them of the true and devastating effects of cancer. Just one week before Annie died, while struggling with every breath, she asked her husband Nick to carry out her mission of educating people and empowering people to prevent and eradicate cancer once and for all

Nick created the ASCEND Foundation so that even in death, Annie could continue her wish to help those with cancer. The Foundation believes that Americans should be outraged at the number of cancer deaths in our country – almost 600,000 people die every year in the United States. This number is equal to the population of Washington, D.C., Seattle, Austin, or Nashville - Imagine U.S. cities disappearing every year after year after year. ASCEND believes that we must “Make Cancer a National Priority” through awareness, education, prevention and scientific research funding. ASCEND believes in UNITY among all cancer and disease foundations, advocacy groups and public health organizations in order to bring forth a strong message to key decision makers of the need for awareness and to continue funding cancer research at the highest level. ASCEND believes in the “bench to bedside” approach of integrating basic cancer research with translational methods to ultimately benefit the cancer patient. It is through scientific research, collaboration and clinical trials that we will find a cure for cancer.

While Nick was able to make ASCEND what it is today, he unfortunately lost his life in a car accident in 2003. However, the organization continues its operations and honors the entire Scandalious family.

What ASCEND Is Doing Now:
ASCEND’s latest project is to provide educational cancer tools for children, school teachers, families and care givers. The initiative will educate children about cancer, its impacts both socially and physically, along with methods of early detection and lifestyle habits to prevent cancer. ASCEND has partnered with Sylvan Dell Publishing to launch a special children’s book along with a cuddly stuffed dog character from the book outfitted to demonstrate cancer treatment protocols. ASCEND’s goal for this initiative is to change the future of cancer one child at a time through education on early detection and preventative lifestyles. The books will be distributed to hospitals and schools across the nation.

To further help in the ASCEND Foundation’s effort to eradicate cancer; MoM Spa will be accepting donations during the entire month of October. MoM Spa would like to thank Skirt for their generous sponsorship.

For more information or to schedule an appointment for the Day of Giving, please call MoM Spa at 843-849-4955 or visit www.themomspa.com.


The "Daisy Dash" 5K
A fundraiser for
"Simply Divine Garden", a local, volunteer
organization that designs and installs gardens for cancer patients


from Darcy Whalen, Founder/Director, Simply Divine Garden ...

Our Daisy Dash, a 5K fun run, will be held on October 10 to raise money for our gardens. Please pass the word. People can sign up online at our website. If they do not want to walk or run, they can be a LAZY DAISY and still get a tee shirt!!! Click here for more information.


David M. Bailey

David Mark Bailey, 44, of Earlysville, died of brain cancer on October 2, 2010 in Charlottesville, VA and was welcomed into everlasting life at his place at the Table with our Lord and Savior Jesus Christ.

Born February 26, 1966, David was the son of Kenneth and Ethel Bailey, missionaries to the Middle East. For the first 22 years of his life, his home was Beirut, Lebanon, including the first ten years of the Lebanese civil war. Because of war, the family was obliged to evacuate first to Switzerland (1967), and later to Cyprus (1982). David’s two final years of high school were completed in a private school in Germany because he was, as a young man, especially vulnerable on the streets of Beirut.

David attended Grove City College in western Pennsylvania, where he met and married his soul mate, Leslie McGarvey, of Emlenton, PA. During his college years he was active as a performing songwriter, playing evening and weekend gigs with a music partner. He also enjoyed choir, frat life, acting, and organizing an underground newspaper. David graduated with majors in English and Communication Arts. In the late 80’s, David and Leslie relocated to the Washington, D.C. area where David worked for the U.S. government in satellite imagery analysis. His career evolved to training and then program management with numerous software subcontractors, ending with employment with Eastman Software in Massachusetts. Their daughter, Kelcey, was born in 1992 and son, Cameron, in 1994.

The day prior to moving to the Boston area, in July of 1996, David was diagnosed with brain cancer – Glioblastoma Multiforme IV (GBM). He was expected to have fewer than two years to live. Eager to have his life make a difference in the lives of others, he gave up his career in the software industry and, with a great leap of faith, launched a third career as a performing songwriter – a “troubadour of hope.” Following two surgeries, radiation, experimental chemotherapy and nuclear therapy, David criss-crossed America (and Europe) singing in coffee houses and churches, for cancer conferences and cancer survivor groups for 12 years. David wrote all of his own songs, which grew out of his experiences of war and of battling a deadly cancer. He sang of faith, hope, love and of living life to its fullest each day. He experienced a recurrence of brain cancer in late 2008, recovering enough to tour in 2009 and early 2010. Enduring numerous additional surgeries and difficult treatments, David made a final tour in July of this year.

David is survived by Leslie, his wife of 23 years; his children, Kelcey and Cameron; his parents, Kenneth and Ethel Bailey; a sister, Sara Makari and her husband, Victor; numerous sisters- and brothers-in-law and eight nieces and nephews. To quote a line from one of David’s songs, “The tears of the angels form a river where you can wash your pain, and even in the middle of the thunder, don’t forget the love inside the rain.” His theme was “There may be years of tears behind you, but right now you’ve got One More Day.” He leaves behind him a musical legacy of 23 professionally-recorded CDs. His music and his personal testimony have affected the lives of countless thousands in this country and around the world.

The family offers deep gratitude to Drs. Henry Friedman, Allan Friedman and David Reardon at Duke and Dr. David Schiff at UVa and their caring staffs. We also offer loving thanks to our family of caregivers at the Hospice House, Hospice of the Piedmont, Charlottesville. Memorial gifts are welcome and may be made to Blue Ridge Presbyterian Church, 6566 Spring Hill Road, Ruckersville, VA 22968. Half of those gifts will be equally divided between the following brain tumor organizations: The American Brain Tumor Association, the Preston Robert Tisch Brain Tumor Center at Duke, Gray Matters Foundation, the Florida Brain Tumor Association and T.H.E. Brain Trust.

David was a charter member and Elder at Blue Ridge Presbyterian Church in Ruckersville, VA, where he co-chaired the Evangelism Committee. Baptized into the Covenant, he was a lifelong Christian and we will have a Celebration of his life and of the Resurrection at a Memorial Service on Tuesday, October 19, 2010 at 2:00 pm at Meadows Presbyterian Church in Charlottesville, VA. His daughter suggests an attire of tie-dye, if you like. David would be wearing jeans and ask you to check out his website, www.davidmbailey.com.


David M. Bailey, a Glioblastoma survivor since 1996
Concert at Furman University on September 19th

from Julie Houston, President, The Brain Tumor Awareness Organization ...

I wanted to forward this information to you as we so rarely have David appear in South Carolina. The concert is free and David tells his story weaved into his lyrics and music. It is life-changing to be in the room with a fellow survivor. Prior to the concert, community ministries will assembling 600 patient resource backpacks filled with all the latest resources. We will be updating you as to when these will arrive in Charleston for your group.

Click here for a printable concert flyer (PDF).      To learn more about David, visit www.davidmbailey.com.


A Simply Divine Garden for Eddi



Eddi Davies receives a visit from Darcy Whalen (right)

Darcy is the founder of
"Simply Divine Garden", a local, volunteer organization that designs and installs gardens for cancer patients. Darcy proposed a container garden on the patio, which will give Eddi a beautiful view from her kitchen table. Darren Kerr already has a "Simply Divine Garden" at his home in Mount Pleasant. Eddi's will be installed in October. Eddi wishes to thank Dr. Giglio and his staff for nominating her to receive this encouraging and generous gift. (Click here to read "Eddi's Story")

The "Simply Divine Garden" volunteers arrived on October 17th
and transformed Eddi's empty patio into a beautiful container garden.
Click here to see a photo gallery of the garden under construction.



Eddi enjoys her new garden and shows it to two of her grandchildren.

Bob Behanian from "Live 5 News at 5:30" interviewed Darcy and Eddi with the garden on October 21.
Click here to read the interview.


Kate's Story of Hope
by Kate Watson

So there I was one day, listing to presentations minding my own business and pretending to listen to representatives of member companies, but really looking at the Capitol Hill gleaming in outside my window, it was a beautiful fall day - crisp, cool and clear and all was right in the world -silly me!
(much more to come. Stay tuned!)


Press release: MUSC research funding again soars to record levels

Charleston, S.C. (August 14, 2009) – Despite a challenging economic environment and increased competition for federal and corporate research dollars, biomedical research at the Medical University of South Carolina (MUSC) continues to accelerate with external funding awards topping $217 million in fiscal year 2009.

The record funding includes more than $103 million from the National Institutes of Health (NIH) and surpasses the previously held record set in fiscal year 2008 by $15 million. Among the university’s notable achievements is the National Cancer Center designation of the Hollings Cancer Center this past year.

“The continued growth of the research programs over the last few years is a tremendous achievement by the MUSC team and reflects the special commitment of talented faculty and individuals across all aspects of our organization,” said Stephen M. Lanier, Ph.D., MUSC Associate Provost for Research and pharmacology professor.

“This achievement is a tangible demonstration of the determination and resourcefulness of our talented faculty and staff, who deserve congratulations and praise for a job well done,” said John Raymond, M.D., MUSC Vice President of Academic Affairs and Provost.

The growth in the research programs is an important stimulus for the regional economy as new faculty and staff move to the area and additional jobs are created to carry out the research. According to Lanier, the Charleston Innovation Center, a new company laboratory incubator developed through a partnership with the South Carolina Research Authority, the City of Charleston and MUSC, will serve as another important platform for the area’s growth in biomedical sciences.

With support of the South Carolina Research Infrastructure Act, MUSC began construction of a 100,000 square foot Drug Discovery Building and a 96,000 square foot research building for programs in cancer genomics and bioengineering that will serve as the home of the South Carolina Bioengineering Alliance. The bioengineering building will house faculty and students from MUSC, USC and Clemson as part of the Alliance. These research facilities will also bode well for continued growth in the biosciences.

The FY09 research funding numbers do not include major research funding awards recently announced in July, including a major $20 million grant from the NIH to the South Carolina Translational Research Institute, with Kathleen Brady, M.D., Ph.D., at MUSC as the lead investigator, and a $20 million Research Infrastructure Grant from the National Science Foundation for biofabrication awarded to South Carolina with Roger Markwald, Ph.D., at MUSC as the lead investigator.

MUSC President Ray Greenberg, M.D., Ph.D., added that, “The people of South Carolina can be very proud that cutting edge research is taking place in their state, which will improve health, create jobs, and provide for a brighter future for all our citizens."

About MUSC - Founded in 1824 in Charleston, The Medical University of South Carolina is the oldest medical school in the South. Today, MUSC continues the tradition of excellence in education, research, and patient care. MUSC educates and trains more than 3,000 students and residents, and has more than 11,000 employees, including 1,500 faculty members. As the largest non-federal employer in Charleston, the university and its affiliates have collective annual budgets in excess of $1.6 billion. MUSC operates a 750-bed medical center, which includes a nationally recognized Children's Hospital and a leading Institute of Psychiatry. For more information on academic information or clinical services, visit
www.musc.edu or www.muschealth.com.


Eating Well for Cancer
by Stacey Renouf, Outpatient Dietican at MUSC
(presented at the Brain Tumor Support Group meeting on July 8th)

OVERVIEW LINKS TO ONLINE RESOURCES
Cancer Survivor/Prevention Diet
Meat Guidelines & Grilling
Tips to Increase Plant-Based Protein
Specific Plant-Based Diets
Pesticides & Organic Food
Diet Supplements
Nutrition "Survival" Tips
MUSC Nutrition Services
  Diana Dyer - Cancer & Nutrition Specialist  
National Cancer Institute
American Cancer Society
American Institute for Cancer Research
Arizona Cancer Center "Nutrition Ways"
Caring4Cancer Nutrition


Roper St. Francis, Charleston Hematology Oncology
Break Ground for New West Ashley Cancer Center

Charleston, SC – Roper St. Francis Cancer Center and Charleston Hematology Oncology Associates, P.A. (CHOA) today celebrated the groundbreaking of their new West Ashley Cancer Center. Located on the campus of Bon Secours St. Francis Hospital on Henry Tecklenberg Drive, the 76,000-square-foot, $19 million outpatient facility is expected to be completed and see its first patients in fall 2010.
Click here to read the full story.


MUSC receives $2 million gift

CHARLESTON, S.C. (AP) -- The Medical University of South Carolina is getting $2 million from the family of a Charleston philanthropist for brain tumor research. The Post and Courier of Charleston reported Thursday the money comes from the family of Jerry Zucker, who died last year of a brain tumor. About half of the donation will be used to endow a chair at MUSC supporting a researcher working on brain tumors. The money will also be used for spinal cord research and allow the university to bring care to the people of Tanzania in Africa. Tanzania has only three neurosurgeons - about one for every 13 million people.  
Click here to read the full story.


In case you missed it ...

The Brain Tumor Support Group Meeting on May 13

Marty McGee gave an excellent presentation on "Chemobrain" and distributed fact sheets from the CancerCare Chemobrain Information Series (available online in PDF - click on the four links below):

Cognitive Problems after Chemotherapy
Doctor, Can We Talk About Chemobrain?
Improving Your Concentration: Three Key Steps
Combating Chemobrain: Keeping Your Memory Sharp

Information about two special events was also distributed at the meeting:

National Cancer Survivor's Day: Celebrating Life
sponsored by Tri-County Cancer Survivors, Inc.
Sunday, June 7, 2009   *   2:00-5:00 pm
The Charleston Elks Lodge, 1113 Sam Rittenberg Boulevard
To register, click here, or phone 843-873-9929.

A Treatment Update on Glioblastoma
a recorded tele-conference presented by CancerCare
To listen to the podcast online, click here,
or phone 1-800-625-5288 and enter the code (1324460).



Pitch for Brain Tumor Awareness
submitted by Amy Bradley, a brain tumor survivor since '06

James Bradley, Amy's husband, won an auction at Folly's Sea & Sand Festival - the honor of throwing out the first ball at the
Charleston RiverDogs game on Friday, May 22nd! They will announce that the first pitch is in honor of "National Brain Tumor Awareness Month".

Amy has invited everyone to join them in section 211, but be sure to arrive before 6:45. If you need handicapped seating, please call Lavon Alls, and ask for section 117. The Riverdogs' number is 723-7241. For ticket information or to buy online, click here.

A 3'X5' banner is being donated for the occasion by Brian M. Carroll of the Marine Marketing Group, Inc. in Mount Pleasant. Thank you Brian!

To see the Channel 4 News report of this special event, click here.



BRAIN TUMOR ACTION WEEK!
Help us raise brain tumor awareness.

During Brain Tumor Action Week, May 4 through May 8, the Neuro-Oncology team at MUSC will have a display on the second floor of the Hollings Cancer Center. If you would like to help, please contact
Rachel Beard (phone: (843) 792-6592).

FREE Brain Tumor Awareness Bracelets and brochures
Enter our raffle for a chance to win a gift certificate to a Charleston restaurant!


Please join us for the
Brain Tumor Vigil Service,
"A Service of Healing, Remembrance, Advocacy and Hope"
Wednesday, May 6, 2009 from 2:00 - 2:30 pm
in the Hollings Cancer Center Healing Garden






Eddi's Story
Updated August 4th, 2011

Eddi Davies passed away quietly and peacefully in her sleep this morning. After remaining stable for more than two years, she was diagnosed with recurrent glioblastoma and enrolled in a
study for a new treatment for GBM at MUSC. The device to deliver the new chemo was installed by Dr. Bruce Frankel on June 27, but the next day, she was unable to stay awake, and she remained asleep most of the time from then on. After three weeks of trying to bring her out of this state, including another surgical procedure, the neurosciences team at MUSC said that they were "out of options". Eddi was moved to the Hospice Center of Charleston on July 20th, where she spent her last two weeks sleeping comfortably and free from pain.

A "Celebration of the Life and Resurrection of Eddi Davies" will take place at St. Paul's Summerville Episcopal Church on Sunday, September 25th at 2:00. There will another memorial service at Central Presbyterian Church in Towson, Maryland on Saturday, October 1st at 10:30. The family requests donations in her name to the Medical University of South Carolina at the address below:

MUSC Department of Neurosciences
96 Jonathan Lucas Street, Suite 324 CSB
Charleston SC 29425


We hope and pray that the funds raised in her memory will help Dr. Frankel and Dr. Giglio discover a cure for GBM. This will be Eddi's way to participate in the research study after all.

Eddi was a brain tumor survivor for more than two and a half years. Her original story below was posted on May 1, 2009. Her biography is on the Davies Family history site.


Christie Whitener, Associate Director of Development at the Hollings Cancer Center, asked us to submit Eddi's
story for an MUSC newsletter, including the photo wearing her new hairpiece from "The Looking Glass" shop.


Eddi Davies

I had been having some problems with my vision for several months, and then I began having brief spells when I felt confused and disoriented, but these things were possible side effects of the heart medications I had been taking since I had a mild heart attack in July. When I was unable to function normally at the MUSC Cardiac Heart Rehab Center, and I began to lose control of my left hand, however, my cardiologist told me to go the MUSC Chest Pain Center. My husband suspected that I had suffered a mild stroke, but the scans showed that I had a large brain tumor! My first month on Medicare!

I was immediately taken to the main hospital, and a few days later, a week before Christmas, Dr. Byron Bailey performed the neurosurgery to remove as much of the tumor as possible. He told my husband that it was probably the same type of tumor that Senator Kennedy has, and the patholgy report later confirmed this (glioblastoma multiforme, grade IV).

I was in the ICU for two days and remained at MUSC until December 23rd, when I was taken across the street to the Roper Rehabilitation Hospital. My roommate and I sang Christmas carols together - the Grinch can't stop Christmas from coming!.

The therapists and nurses at both hospitals were very patient and helpful, but it took several weeks to regain the use of my limbs. As the swelling in my brain subsided, my cognitive functions gradually returned to normal, but my vision is still affected four months later.

My husband and I retired to Charleston from Baltimore four years ago, so we considered going up to Johns Hopkins for my cancer treatments, A close friend of ours in Maryland, who is a doctor, discussed my case with some of his friends at Hopkins, and he assured us that I would receive the same excellent care at MUSC.

In January, I began six weeks of radiation at the Hollings Cancer Center, under the direction of Dr. Joseph Jenrette, and also took chemotherapy capsules (Temodar) prescribed by Dr. Pierre Giglio, the head of my oncology team. Everyone I have met at the Hollings Center has been extremely pleasant and compassionate.

In March, I began 28-day chemo cycles, each of which concludes with another MRI. Every scan has shown that tumor has remained the same size since the surgery. We know that some of the maligmant cells are still lurking in my brain, but we have been encouraged by joining the MUSC Brain Tumor Support Group, where we have met people who have survived glioblastomas for several years and are still doing well.

I am also very thankful for the hundreds of people who have been praying for me. The outpouring of love and support from Christians at our old church in Maryland, our new church in South Carolina, and family and friends all over the country has been overwhelming. I am confident that am receiving the best treatment humanly possible, but my faith is in the Great Physician and His will for my life. I know that Jesus is with me now, and I will be with Him forever, but I pray that He will allow me more time to watch my young grandchildren grow up and to do His will here on earth.


Links to other web pages (click "Back" to return to this page):

WebMD: Genetic Defect at Work in Deadly Brain Tumors
1 in 4 Glioblastomas May Have Newly Discovered Fault in Gene

Promising Vaccine Being Tested to Fight Brain Cancer at UCLA

UCSF patient makes history with brain tumor vaccine

Doctors remove brain tumors through a minimally invasive procedure
that allows access to the tumor through the eyelid.


UCLA Newsroom: Avastin dramatically improves response, survival in recurrent brain cancers

"Simply Divine Garden", a volunteer organization that designs and installs gardens for cancer patients

The August edition of the MUSC NeuroNews (PDF) contains an article on page 4
about Brain Tumor Awareness Month, including photos of the vigil service.

Study: 7 key genes predict brain cancer survival

MUSC to receive $20 million grant from the National Institutes of Health
Brain Tumor Surgery ("The Doctors" on TV)
3-D brain surgery software ("The Doctors" on TV)

Roper St. Francis West Ashley Cancer Center groundbreaking
Brain Tumor Awareness Organization Newsletters

Scientists battle brain tumors with scorpion venom
"Living with Cancer" series on MSNBC

Focus on a cure - Zucker family donates $2M to MUSC to assist with research
ABC News 4 Story: "30 Minute Brain Surgery" (Laser Thermal Ablation at MUSC)

Support MUSC Neuroscience Research
Support the Hollings Cancer Center

Tri-County Cancer Survivors
CancerCare

The Brain Tumor Vigil Service (PDF)
Brain Tumor Awareness Organization
Go Grey in May Campaign (PDF)

The Crab Shacks are participating in the Donate Your Plate Campaign (PDF)

Meeting With Your Representatives (PDF)
Calling Your Representatives (PDF)
May Awareness Activities (PDF)

North American Brain Tumor Coalition
The Healing Exchange Brain Trust
Cancer as a Turning Point - a free conference in Greenville, SC, June 6-7

Cottonseed-Based Drug Shows Promise Treating Severe Brain Cancer
FDA Grants Accelerated Approval of Avastin for Glioblastoma
Studies find two new methods for curbing nausea of chemotherapy
Sen. Edward Kennedy’s brain cancer in remission

Restaurants that made generous donations in support of Brain Tumor Action Week:
Infuzions         The Kickin' Chicken         Gilligan's Steamer & Raw Bar

If you know of other helpful sites, please send us the links.
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