TSC Matters

December Note from the President & CEO

As I reflect on 2019 one theme that runs through most of what we accomplished is the incredible power of collaboration. I initially highlighted this idea in the very first edition of TSC Matters back in April, specifically focusing on how through collaboration we can more effectively accelerate research, provide resources to our constituents, and advocate on behalf of everyone with tuberous sclerosis complex (TSC).  This approach has continued to ring true the entire year.

A microchosm of this power was on display earlier this month when several TSC Alliance staff members traveled to Baltimore for the American Epilepsy Society (AES) Annual Meeting. This meeting offers us the opportunity to meet with our corporate and other non-profit partners to align on initiatives for the coming year, provide resources and information about TSC to clinicians from around the world, and learn about the latest research and treatment options in epilepsy. Two AES events particularly highlighted the power of collaboration.

On Friday, December 6, the TSC Alliance and University of Maryland Medicine co-sponsored Partnerships for a Cure, a reception to celebrate the launch of the Treatment Centers for Adult Neurodevelopmental Disabilities, comprised of the University of Maryland Center for Adults with Neurodevelopmental Disabilities and the Tuberous Sclerosis Complex Center of Maryland. These centers will provide comprehensive clinical care for adults with neurodevelopmental conditions such as autism, intellectual disability, epilepsy and TSC. These centers serve as a bridge from pediatric and adult care, serving as a model which may be replicated elsewhere to address a significant ongoing need in our community. The herculean effort to launch these centers would not have been possible without the extraordinary work of our advocates in Maryland with special appreciation to Lauren and Sean Shillinger, the championing of a visionary leader in Dr. Peter Crino and the compassionate support of Maryland Governor Larry Hogan and representatives in the state legislature.

Pictured:  Gary and Sonia Mangum with their son Chase and friend Sommer, the Honorable Larry Hogan (Governor of the State of Maryland), Sean and Lauren Shillinger, Kari Rosbeck, Dr. Peter Crino, Dr. Jay A. Perman (President, University of Maryland, Baltimore). Photo courtesy of the Executive Office of the Governor.

“It is through the efforts of fierce advocates that rare diseases like TSC are getting the attention needed to find cures,” said Governor Larry Hogan. “We were proud to work across the aisle to include $500,000 for this center in our most recent budget, and the state will continue to strongly support this partnership. Now, families who are coping with this disease will have access to the best doctors and international experts, and Maryland will be recognized as a premier center for adult care and research in TSC.”

Then on Sunday, December 8, the Infantile Spasms Action Network (ISAN) convened to discuss efforts around Infantile Spasms Awareness Week (December 1-7). ISAN is a collaborative network of more than 25 national and international organizations dedicated to raising awareness of infantile spasms, a devastating type of seizure in infants that can have a catastrophic impact on development if they are not quickly diagnosed and treated. The work this group does to raise awareness is so incredibly important, and it is inspiring to witness how ISAN members join together to achieve our shared goal, especially by supporting new rare disease advocacy organizations in the group who benefited from the combined experience and wisdom of the other members. I am proud to part of this amazing collaborative effort.

Before the calendar turns to 2020, I’d like to share a few things for which I’m grateful. I’m grateful for the clinicians and researchers who dedicate their careers to improving the lives of those with TSC. I’m grateful for the amazing volunteers who serve as the backbone of the TSC Alliance and whose life experiences drive our focus and efforts throughout the year. I’m grateful for our partners who we continue to draw inspiration from and with whom we can accomplish so much more together. Finally, I’m grateful for my tireless staff who show up every day committed to making a difference for everyone affected by this disease.

May you and yours have a peaceful and joyous holiday season. Thank you for reading TSC Matters this year, and thank you for your continued support. We are truly a stronger organization because of you.

In hope,