fbpx
SKIP TO MAIN CONTENT

TSC Matters

February Note from the President and CEO

 

 

 

Following what was a truly inspiring 45th anniversary year, all of us at the TSC Alliance started this new year motivated to capture that momentum and channel it into propelling research forward and providing support and resources for individuals and families affected by tuberous sclerosis complex (TSC) around the world. Transitioning from 2019 and what was a year of celebration, I am excited to dub 2020 the “Year of Innovation.”

This year we are rolling out new research initiatives, new partnerships and new resources for those with TSC; we are bringing on new team members; and we are even moving to a new office space as our organization continues to evolve. To learn more about the many initiatives the TSC Alliance has planned for this year, be sure to check out the January episode of TSC Now.

There are two new initiatives I am particularly excited to highlight. The first is our Newborn Screening Workshop scheduled in June. Our vision is to eventually get TSC included in the newborn screen panel so all infants are tested for TSC to ensure an early diagnosis, appropriate interventional treatment and care for the best possible outcomes. This will be a multi-year process, but we are excited to take the first step and learn from experts who have been through this process and can help us shape a clear roadmap forward.

The second initiative I’d like to highlight is the Improving Partnerships and Lives Grant program. One of the bedrock values of our organization is our commitment to collaboration, we know we can go even farther with partners. The purpose of these grants is to identify and support US nonprofits that are providing critical services to people with TSC in their community, with a specific focus on academic support, skills and advocacy support, social and functional skills opportunities, and basic needs support. If you have received support from a local nonprofit or know of one providing services to TSC families in your community, I encourage you to share the application with them so they can apply for funding.

Next month our community leaders from across the country will gather in DC for our annual March on Capitol Hill and Volunteer Leadership Summit. These volunteers are the backbone of our organization and this is one of my favorite times of the year because they bring with them a relentless enthusiasm and insights from their communities that help us refocus on the most pressing needs of our community. If you would like to get involved in the March on Capitol Hill, you can reach out to your local Community Alliance leaders to share your stories and why federally funded research is important to you.  They can then bring your stories with them when they meet with  Congressional representatives from your state. You can find contact information for your local leaders here.

Thank you for reading TSC Matters and thank you for being a part of our community!

In hope,