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TSC Matters

April Note from the President & CEO

 

 

 

It is crazy to think that six short weeks ago we were wrapping up an emotional and productive March on Capitol Hill and Spring Board Meeting, which brought together our amazing volunteers and leaders from around the country for three full days of advocacy, strategic planning, and celebrating our community.  As part of those meetings we began developing protocols for COVID-19 and its impact on the TSC Alliance, but there was no way we could anticipate just how drastically this pandemic would affect our organization, our lives, and the world.

Since then, the TSC Alliance has made several tough, but necessary decisions for the safety of our community and staff, including rescheduling all our spring events and having our dedicated team work remotely. The financial impact of those decisions is significant, but we remain steadfastly committed to driving tuberous sclerosis complex (TSC) research forward and providing support to the TSC community. For the last few weeks, we have worked tirelessly to develop resources to address COVID-19, including a FAQ for parents and caregivers, recommendations for physicians, and an ongoing webinar and open forum series. If you have not done so, I encourage you to check out these resources at www.tscalliance.org/COVID-19.

We have also continued to collaborate with our valuable partners, including The LAM Foundation, Child Neurology Foundation, Dup15q Alliance, Dravet Syndrome Foundation, Lennox-Gastaut Syndrome Foundation, Seizure Tracker, and others to develop Virtual Town Halls on timely and important topics for those affected by rare diseases and to assemble prominent physicians and experts to answer the tough questions our families are asking in light of everything that is happening. Collaboration is a core value of our organization but is even more critical now as we all operate on tighter budgets. I also want to thank our incredible corporate partners who have generously stepped up to support these initiatives.

Finally, we have drawn strength and inspiration from you, our committed TSC community. The last few weeks have tested us in countless ways, as we all adapt to a new normal at home, but what inspires me the most through these trying times is witnessing how you all have risen to the moment, supported each other, and demonstrated time and time again that you are #TSCstrong. I am grateful for all of you and we will weather this storm together.

In hope,