October Note from the CEO
This year has challenged us to come up with new ways to bring our community together, to empower those living with TSC and their loved ones and to provide support in new and different ways to those affected by TSC. Of course, no pandemic can stop the challenges people with tuberous sclerosis complex and their families and loved ones face on a daily basis. COVID-19 also can’t stand in the way of the critically important work of the TSC Alliance. We remain committed to ensuring TSC research continues and to making sure our organization provides top-notch support programs and services.
At every turn, and with your help, we have been able to re-imagine how we do business and translate our old models into virtual successes, including:
- Working with our partners at The LAM Foundation to reconfigure our Regional Conferences as a three-part Virtual TSC & LAM Conference Series. The third and final conference is coming up on Saturday, November 7 so register now.
- Developing over 30 COVID-19 webinars, Townhalls and open forums at the start of the pandemic to meet the most immediate needs of our TSC families and individuals.
- Adding a COVID-19 study to our Natural History Database to understand its impact on individuals with TSC and making participation easy for anyone from the safety of your home.
- Focusing on TSC-Associated Neuropsychiatric Disorders (TAND) through a series of webinars with hands on practical tips especially important during the pandemic; supporting TANDem in the development of clinical guidelines for care and treatment; providing supplemental funding for the JETS study (looking at early behavioral intervention on developmental outcomes) to transition from in person to remote visits.
- Galvanizing the community around our May TSC Awareness Month of Caring.
- Consolidating 30+ local Step Forward to Cure TSC walks into one National Virtual Walk-Run-Ride Weekend that raised more than $600,000 for TSC research and support services.
- Bringing Comedy for a Cure to the entire community with our Summer and Fall Virtual Editions.
Now, with the hindsight this year has offered and considering the ongoing pandemic, we are proactively postponing all in-person events until the third quarter of 2021. In their absence we are building off lessons learned to develop unique ways to bring information and provide support in deeper and more meaningful ways next year that aren’t retrofitted versions of our in-person offerings, but rather new opportunities created for a virtual world. I’m excited to share two examples of how we plan to accomplish that.
First, in lieu of Regional Conferences we will be hosting a comprehensive series of webinars around four focus areas: TSC-Associated Neuropsychiatric Disorders (TAND), Transition to Adulthood, TSC Life Stages and Research Updates. Multiple webinars will be offered each month and feature leading experts providing a deeper dive on each of these subject areas. A tentative schedule of webinars for the entire year will be included in the Winter 2021 issue of Perspective magazine, which will come out in early January.
Second, we are currently in the process of interviewing candidates for the new role of Director of Medical Affairs. This person will serve as a bridge between investigators in our Clinical Research Consortium and individuals affected looking to participate in clinical trials. They will also provide information and assistance to constituents needing help accessing clinical care for TSC and FDA-approved treatments. We know that access to medication continues to be a challenge, especially during the pandemic, and our hope is that this person can be a lifeline to help families who are struggling with this issue. Finally, this person will lead the design and implementation of an online TSC Navigator tool to help individuals and families navigate the complex TSC healthcare system and proactively manage their care. This is such a crucial part of our strategic vision and therefore we are taking the time to find a qualified candidate who will help move our organization to the next level.
All of what we have accomplished so far and all of what we hope to do next year would not be possible without the generosity and dedication of all of you. You have helped us stay afloat during these uncertain times and together we will weather this storm. Thank you for being a part of this community.