NBTS Summit - Patient and Family Program

Patient and Family Program

The Patient and Family Program began with a Welcome Reception on the evening of Friday, Nov. 4. Participants enjoyed a musical performance by brain tumor survivor, Chris Stein, and an Art Gallery made up of stories and photos from people affected by brain tumors. Attendees also had a chance to meet Get Your Head In The Game® spokespeople.

Brain Tumor 101: Your Personal Walk Through Survivorship

 This day-long program began with David Andrews, MD, from Jefferson University in Philadelphia, talking about the latest treatments for brain tumors. Next, Elana Farace, PhD, Penn State, Hershey, spoke about cognitive issues.

Throughout the Patient and Family Program, attendees had the opportunity to learn more about advocating and to become an NBTS advocate. David Arons, the NBTS Director of Public Policy Advocacy, spoke with participants one-on-one and as a group about the critical roles the brain tumor community plays in telling the government what it wants and what it needs. In the video on the left, Liz Harrington speaks about what it means to her to be an advocate.

Everyone then had the opportunity to attend breakout sessions on five topic areas: Cognitive, Financial Needs, Caregiver, Clinical Trials, and Symptoms (specifically fatigue and seizures) where they could ask questions. Information was also available throughout the day from important resources including the NBTS Clinical Trials Matching Service by EmergingMed, the Epilepsy Foundation of America, CaringBridge, Cancer Legal Resource Center, CancerCare, Visiting Nurse Service of Philadelphia, Cancer Support Community of Philadelphia, Patient Advocate Foundation, and Family Caregive Alliance. Not sure which of these resources might be of interest to you? Check out this handout.

Lunch featured brain tumor survivor, Karen Armentani, who used her own personal story to talk about the importance of humor in coping with a brain tumor. Following lunch, the day wrapped up with two support groups -- one for survivors and one for caregivers.

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