December Note from the CEO
In the last edition of TSC Matters back in October, I reflected on all the ways the COVID-19 pandemic has challenged our organization to pivot and how you have been critical to our ability to continue the important work of the TSC Alliance. This month, as the year comes to a close, I want to express my gratitude once again to the entire TSC community for helping to keep us afloat during a tumultuous year. Just last week we raised over $33,000 for #GivingTuesday, which is the latest testament to your incredible generosity. I would also like to share a few organizational updates as we turn to the new year.
On November 20, we held the Fourth Annual Virtual Sound Bites, an evening of music and celebration you could enjoy from home. We honored Angela Wiltscheck and family with the Courage in Leadership Award, and the ever-talented Kat Perkins with the TSC Champion Award. The evening also included an update on the research and clinical care advances, and culminated in an intimate acoustic concert featuring Chris Hawkey, Erin Schwab, Kat Perkins and other incredible local performers. If you missed this incredible event you can re-watch now and donate to Fund a Cure, which supports the TSC Alliance’s clinical trial accelerator fund.
On December 1, Ashley Pounders, MSN, FNP-C joined the TSC Alliance team on as our first Director, Medical Affairs. In this new position, she will provide information and assistance to constituents needing help accessing clinical care and FDA-approved treatments. She will also lead development of a new online “TSC Navigator” tool to help individuals and families maneuver the intricate TSC healthcare system and proactively manage their care. Ashley is very familiar with our organization and mission from her time as lead coordinator for the TSC Center of Excellence at Le Bonheur Children’s Hospital and we are so thrilled to have her join our team.
Last week also marked Infantile Spasms Awareness Week (December 1-7). Since 2015, the TSC Alliance has been a partner in this important initiative, and together with the 32 other entities that make up the Infantile Spasms Action Network (ISAN) we once again worked to raise awareness of these devastating seizures and the importance of seeking help even during the pandemic. This effort included articles about families affected, podcasts and blog posts, and a coordinated effort on social media, including sharing the video below. If you want to learn more about this effort visit infantilespasms.org and listen to the latest episode of TSC Now.
The TSC Alliance and our community-driven research was highlighted during the Milken Institute’s Future of Health Summit. Serving on the Summit’s opening panel was an amazing honor. You can view this session as well as all of the important discussions here.
Finally, in January Vice President of Support Services Dena Hook will be retiring. For the last 13 years, Dena has completely reshaped our organization’s outreach and support efforts to meet the changing needs of individuals with TSC throughout their lifetime. Using her expertise in educational advocacy, Dena has supported thousands of parents through the Individualized Education Program (IEP) process and has trained a corps of Educator Mentors and Education Parent Mentors to continue to provide resources and help to parents as they seek the services they are entitled to for their kids. She also launched both the Adult Regional Coordinator and Dependent Adult Transition Resource Coordinator programs to fill a crucial gap in services to adults with TSC. Moreover, she has spent countless hours on the phone in the evening, on weekends and over holidays helping parents get the life-saving medications they rely on. We wish her the best and her compassion and dedication will be sorely missed by both the staff and the greater TSC community.
I hope you and your family have a healthy and happy holiday season. Thank you for all the ways you have supported the TSC Alliance this year, and we look forward to moving our mission forward even more in 2021.