On Saturday November 3, BBK will be hosting the American Brain Tumor Association’s (ABTA) Boston regional meeting and resource fair at its offices in Needham, Mass. Founded in 1973, ABTA was the first national advocacy organization committed to funding brain tumor research and providing information and education to patients, caregivers, and their loved ones.
For 45 years, ABTA has been providing comprehensive resources that support the complex needs of brain tumor patients and caregivers, as well as the critical funding of research in the pursuit of breakthroughs in brain tumor diagnosis, treatment and care. In anticipation of the upcoming meeting in Boston, we spoke with ABTA Program Manager Christine Daly about the organization and their mission.
Tell us the story of how ABTA was started?
The American Brain Tumor Association was founded in 1973 by two mothers, Susan Netchin Kramer and Linda Gene Goldstein, who both had young daughters with brain tumors. They began planning in January 1973, contacting family, friends, associates, and doctors to gain support and learn more. In April 1973, Susan and Linda held the foundation’s first informational meeting and were heartened and encouraged by the wonderful outcome.
Finding out that you or a loved one has a brain tumor can be overwhelming, certainly lots of emotions. What are some initial steps you recommend as patients and caregivers begin their treatment journey?
Hearing that you or someone you love was diagnosed with a brain tumor is certainly an emotional experience. Patients often experience fear, anxiety, anger, sadness, grief, stress, and more. Most people do not know anyone else diagnosed with a brain tumor, or even the same type of brain tumor. Patients often say it’s helpful to connect with someone else who gets their experience. To help with this, we offer a listing of in-person brain tumor support groups on our website, an online social support community, and a peer-mentoring program.
Do you field a lot of questions from patients and caregivers about clinical research initiatives? If so, what are some of the common questions you get?
Most of the patients and caregivers who contact the ABTA are interested in new or experimental treatment options. One of the most common questions the ABTA receives is about clinical trials for a specific tumor type. Because clinical trials can be difficult to understand or even locate, the ABTA offers a clinical trial matching service, called TrialConnect, to help brain tumor patients and their loved ones find the information they need.
What kinds of events do you hold and roughly how many? Where?
We have multiple events for both fundraising and patient education and outreach. Our biggest fundraising events are our Breakthrough for Brain Tumors 5K (BT5K) Run & Walks that we hold in various cities throughout the country (Chicago, IL; Columbus, OH; Dallas, TX; Denver, CO; Los Angeles, CA; Milford, MI; New York, NY; Tampa Bay, FL; and Twin Cities, MN). We also host Patient & Caregiver education meetings in 6 cities throughout the country (New York, NY; Boston, MA; Washington, DC; Los Angeles, CA; Minneapolis, MN; and Atlanta, GA). Finally there is our annual conference in Chicago in September.
Talk about the event at BBK Worldwide, the structure and what patients and caregivers will get out of attending?
Patients, caregivers and their families will be able to network with others, learn about the latest treatment options, and how to live with a brain tumor. These meetings are a great opportunity for brain tumor patients to get to know not only the resources and healthcare professionals in their communities, but also other brain tumor patients or caregivers who may be going through a similar situation and could lend some advice or “words of wisdom.” We have a wonderful program lined up for this event. Some of the features include: a Brain Tumor Board where a panel of brain tumor specialists will work through real brain tumor patient cases in order to arrive at consensus recommendations for the best tumor-directed and symptom-directed treatments, a Patient and Caregiver Panel where local patients and caregivers share their journey as they are navigating through the process of living with a brain tumor or caring for their loved one who has a brain tumor, and a presentation by Dr. Alexandra Golby on the latest advances in brain tumor treatments.