TSC Matters

Archive for February, 2021

TSC Matters is a bimonthly e-newsletter featuring news from the TS Alliance, TSC research updates, upcoming TS Alliance events and more! Subscribe to stay up-to-date on everything happening at the TS Alliance.

February Volunteer Opportunities Available

Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.”  – Oscar Wilde The TSC Alliance thrives on the service of selfless individuals across the country who give of their time, talent, and resources to help us achieve our mission to find a cure for TSC and improve the lives of those affected. Without them, we would not be where we are today.Read More

Curing the Epilepsies Conference Summary

The National Institute of Neurological Disorders and Stroke (NINDS) has sponsored a Curing the Epilepsies conference every seven years in 2000, 2007, and 2013. A major outcome of these conferences has been the Epilepsy Research Benchmarks, which reflect priorities for research across the epilepsy community. The conference planned for April 2020 was impossible to hold in person due to the coronavirus pandemic. Therefore, the American Epilepsy Society Epilepsy Research Benchmarks Committee revised the benchmarks with community input via a crowdsourcing discussion platform.Read More

In Memory Of Ken Johnson

The TSC Alliance and Endowment Fund Board of Directors recently established the Ken Johnson Memorial Fund to honor and pay tribute to Ken Johnson – a grandparent, organizational leader, compassionate volunteer and inspiration to the TSC community.  Ken passed away January 27, 2021 at the amazing age of 90. Ken and his wife Shonnie were first inspired into action by his daughter-in-law, Emily, who served as the Northern California Representative, beginning after her daughter Annie’s diagnosis 1984, and over the next dozen years.  They witnessed how Emily literally spent so much of her time providing support for newly diagnosed families, raising...Read More

CARING through COVID Survey

For many families of children/adults with genetic syndromes associated with developmental disabilities, the impact of COVID-19 restrictions on access to educational and medical services continues and evolves. We would like to learn about the continued experiences of these families after many months of virtual learning and online therapeutics. The new survey is similar to the previous version. It will take 10-20 minutes to complete. The survey is intended both for individuals who completed the previous version as well as new participants. Take the SurveyRead More