TSC Matters

April Note from the President & CEO

We’re so excited to bring you the first issue of TSC Matters, our new bimonthly e-newsletter! TSC Matters is one of our new digital initiatives aimed at providing resources to our community in varied ways, and part of our greater commitment to making sure that everyone affected by tuberous sclerosis complex (TSC) has access to the resources and support they need. Thank you for reading!

This Spring I’ve traveled across the country to meet with our partners and identify opportunities to collaborate on accelerating TSC research, educating our constituents, and advocating for those living with rare diseases. In San Francisco, the Tuberous Sclerosis Alliance hosted a reception for friends of the TS Alliance to unveil our Five-Year Research Business Plan, our commitment to aggressively accelerate TSC research over the next five years. We shared what we hope to achieve through this plan, why we believe now is the right time to boldly invest in research, and how those in attendance can get involved and help make this plan a reality.

In Atlanta, TS Alliance Chief Scientific Officer Steve Roberds, Government Relations Consultant Mark Vieth and I met with representatives from the Centers for Disease Control and Prevention (CDC) Epilepsy Unit and the National Center on Birth Defects and Developmental Disabilities (NCBDDD) to provide an update on TSC Research, specifically focusing on the PREVeNT Trial. If this trial proves successful as an intervention, this would be the first step in what is needed to apply to get TSC on the newborn screening panel. We also discussed potential areas for partnership. While there, Steve and I also met with our partners at UCB to discuss our current collaboration across the TS Alliance strategic plan and held meetings with community members.

This week I’m headed to Los Angeles for our 8th Annual Comedy for a Cure® on Sunday, April 7! This incredible event would not be possible without the compassion and dedication of our partners on the Comedian Committee, including Jim O’Heir, Shane Brady, Mo Collins, Kate Flannery, Wendy Liebman, Melissa Peterman, Craig Shoemaker and Alex Skuby. Committee members help secure performers and graciously donate their time and their voices to raise awareness of TSC. There are still tickets available if you want to join us for a night of laughter and hope. Check out www.ComedyforaCure.org.

Later this month I’ll be travelling to Boston for our first of five Regional TSC & LAM Conferences, co-hosted with The LAM Foundation on Saturday, April 13. These one-day conferences will feature local leading researchers and clinicians specializing in TSC and lymphangioleiomyomatosis (LAM), as well as speakers from The ARC, Child Neurology Foundation, and MassMutual. These conferences are some of the most important events we will host this year because they allow us to connect those affected with TSC and their families to the leading experts on TSC and LAM, educate them on the cutting edge of research and clinical care, and provide them with resources that they can use throughout their life. We hope you will be able to join us at one of these conferences throughout the year.

Finally, in May I will be named Chair of the American Thoracic Society Public Advisory Roundtable (ATS PAR), a partnership with organizations within ATS representing persons affected by respiratory diseases, sleep-related conditions, or related critical illnesses. The role of ATS PAR is to provide the patient perspective to help ATS shape their educational, research, patient care, and advocacy goals. As Chair, I will sit on the ATS Board of Directors and will serve on committees to develop these goals. I am honored to take on this role on behalf of all ATS member organizations and look forward to advocating for including the patient voice in all aspects of their mission.

Fostering these partnerships is a critical part of our strategic plan because they not only help us raise awareness of TSC and the work we do, but also allow us to lean on the expertise of others and broaden our base of support to reach even more people.  We believe that we can achieve so much more if we work together, which is why we are a member of THRIVE, a collaborative initiative to engage, embrace and drive change in the rare disease community. We’re looking forward to building even more partnerships as we celebrate our 45th anniversary throughout the year.

In hope,