National Brain Tumor Society

Synapse eNews is published monthly by NBTS for all members of the brain tumor community. It includes updates on our Patient Services, Research, and Advocacy and Public Policy programs, as well as the latest research news, and information on NBTS regional events.

January 2011

Happy New Year!
Thank you to all who gave to the NBTS end-of-year appeal. Your support is so important to all of the NBTS programs and new initiatives, such as the Mary Catherine Calisto Systems Biology Initiative and the enhanced Quality of Life focus. There is still time to give or get involved in some other way to make a difference in the lives of those affected by brain tumors. We are looking forward to an incredible year and hope you will join us.

NBTS welcomes Dr. George Gellert
We are pleased to welcome Dr. George Gellert as our new Chief Patient Advocacy Officer, part of our Patient Services department. Dr. Gellert will be, among other things, leading NBTS's efforts as a catalyst, thought leader, and collaborator for systemic change related to brain tumor patient quality of life; and working with leading health professionals, researchers, constituent groups, policy makers, and other organizations to prompt large scale change that leads to notable improvements for all those affected by brain tumors. Please join us in welcoming Dr. Gellert!

Meningioma Webinar: Treatment and Research Updates
Learn the latest treatment and research updates on meningioma tumors. Join NBTS in collaboration with the Brain Science Foundation for a free webinar on Tuesday, March 1, 2011, from 10–11 a.m. PST (12-1 p.m. CST; 1–2 p.m. EST). Dr. Michael W. McDermott, neurosurgeon at UC San Francisco, and meningioma expert, will be our special guest speaker. Please visit our Events page to register for the webinar. For more information, email the NBTS Patient Services team at info@braintumor.org.

Innovation Research Grant Program
The Innovation Research Grant Program is designed to support catalytic research projects that will significantly move the field forward. These may include "out-of-the-box" projects or research that is critical to move therapies down the development pipeline. NBTS accepts Innovation Grant Letters of Intent on a rolling basis. Possible candidates for this program are invited to visit the NBTS website to download the updated Research Grant Guidelines and Application.

Recent Family Caregiver Workshop
On Saturday, January 8, NBTS partnered with Mayo Clinic and the Sontag Foundation to bring the Family Caregiver Workshop to the Florida brain tumor community. The Workshop was telecast to Mayo Clinic in Rochester, Minnesota, which allowed caregivers to join in the presentations, discussions, and hands-on skill building activities. If you are a health professional and would like to learn more about bringing a Family Caregiver Workshop to your center, please visit our website or call the Patient Services Line, 800.934.2873.

NBTS Sponsoring AACR-NCI Conference on Systems Biology
The American Association for Cancer Research and the National Cancer Institute are holding a joint conference on systems biology from February 27 - March 2, 2011, in San Diego, Calif. NBTS is proud to provide sponsorship and promote discussion of an approach that has been designated as an NBTS Initiative to drive research to therapies. A systems biology approach towards the understanding and treatment of cancer examines the many components of the disease simultaneously. Sessions will cover basic cellular processes through clinical applications.

Latest from Community Events
Community Event Highlight:
2010 "Chia Dean" Annual Fundraiser
In 2009, Joe Boehman, Dean of Richmond College at the University of Richmond started this annual fundraiser, where he doesn't shave for a month, in honor of a friend who lost his wife to a brain tumor. He raises money to honor the many he keeps meeting who are affected by the disease. He raised nearly $2,000 for NBTS in 2010.

Upcoming Community Events

Eighth Annual Michael F. Lewandowski Ski Day (January 29 - Colorado) - Share in Michael's passion for skiing and embrace the lessons he left for us on enjoying life to the fullest. The Lewandowski Family is hoping to build on the $100,000 they have raised in the past seven years.
Tenth Annual Students Supporting Brain Tumor Research (February 26 - Arizona) - Join SSBTR for their 10th annual event in Phoenix/Scottsdale. Walk anywhere from 1/4 mile to 5 miles or more. The event is family-friendly and easy for people of all ages in all physical conditions.

A Chapter from the Story Corner
Story Corner is a section of the NBTS website devoted to highlighting the stories of brain tumor patients, survivors, and caregivers. If you are interested in submitting your story, please complete our online form. Here is an excerpt from one of our recent submissions, titled "Love never fails - My Adventure After a 20-Year Journey." Jackie writes: "'Love never fails' has been my motto for over 30 years. My huge, life-long brain tumor was 'discovered' in the summer of 1990. Two family doctors determined that I was over-stressed and one even suggested I move since I had been suffering from 'allergy' headaches. Fortunately, after being advised by a retired pathologist and my dermatologist, I asked to see a neurologist and my life-long mystery was finally solved..." Read more.

Justin gets ready for All-Star Week
Fourteen year-old brain tumor survivor, Justin Friedlander, has fewer than 8,500 baskets remaining in his quest to shoot 63,000 baskets in honor of all those who are diagnosed with a primary brain tumor in the U.S. each year. As a special culmination to this unique awareness-raising program, Justin has been invited to shoot his last basket at NBA Jam Session during NBA All-Star week in Los Angeles on Saturday, February 19. To keep up on all the action as Justin hits the home stretch and prepares for his exciting trip, please visit www.JustinsQuest.com.

Wilmington, Del. - April 30
Brain Tumor Walk

Washington, D.C. - May 1
Race for Hope

San Francisco, Calif. - May 7
Brain Tumor Walk

Boston, Mass. - May 15
Brain Tumor Ride

Denver, Colo. - June 4
Brain Tumor Walk

See a full listing of 2011 Events

A note about 2011 event registration fees: We want participants in our Walks, Rides, and Races to have the best experience possible. To help with that, all NBTS adult event registration fees will be $25 this year. Also, be sure to "Like" the NBTS Facebook Page for the event to find out about important event information, special discounts, and fundraising tools.

Items of Interest

Systems Biology RFA deadline
There's still time to submit an application for the 2010 Systems Biology RFA, but don't delay - applications are due by February 18, 2011.

Latest "Conversation" about systems biology
Dr. Oliver Bögler, Chair of the NBTS Scientific Advisory Council, recently spoke with Dr. Brent Reynolds of Australia's Queensland Brain Institute, to discuss perspectives on the systems biology approach to cancer research.

Have you been reading the "Headquarters" Blog?
Each week the Patient Services team chooses a topic and posts stories, interviews, perspectives, resources, and more on that particular topic. Here are a few highlights from the blog this past month:

Q & A: What is the latest in Quality of Life for brain tumors?
We are fiercely committed to helping patients and families with brain tumors live as optimally as possible. In order to accomplish this goal, we have taken some steps and will be working hard over the next few years.

Resources: Clinical Trials and Research Findings
With over 120 different types of brain tumors, finding quick and accurate information that matches your particular needs can prove challenging. Start the New Year with a list of reliable resources to help you stay up-to-date on the latest brain tumor research and clinical trials.