Episode 9: The State of the TS Alliance

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In episode 9 of TSC Now, host Dan Klein talks to Tuberous Sclerosis Alliance President and Chief Executive Officer Kari Luther Rosbeck. They discuss her favorite memories from the organization’s 45th anniversary year in 2019, the major goals and initiatives for the organization in 2020, the newest members of the team, and upcoming events at the TS Alliance. Be sure to sign up for the TS Alliance bimonthly e-newsletter, TSC Matters, to stay up-to-date on everything going on at the TS Alliance throughout the year. You can subscribe to TSC Matters at https://www.tsalliance.org/tsc-matters/.

Want to submit a future episode topic for consideration? Send us an email at tscnow@tsalliance.org.

Upcoming Events

• March on Capitol Hill, TS Alliance Board and Endowment Board Meeting, and Volunteer Leadership Summit – March 3-5, 2020 in Washington, DC.
• First Step Forward to Cure TSC Walk – Saturday, April 4, 2020 in AZ.
• Comedy for a Cure 2020 – Sunday, April 5, 2020 in Los Angeles, CA. Learn more: https://tsalliance.schoolauction.net/comedy2020/
• Sound Bites Minnesota – Friday, May 8, 2020 in Golden Valley, MN.
• Newborn Screening Workshop – June 2-3, 2020 in Silver Spring, MD.
• Regional TSC & Lam Conferences (dates tentative and subject to change)
  • June 20, 2020 – Memphis, TN
  • September 26, 2020 – Gainesville, FL
  • October 24, 2020 – Denver, CO

Resources and Links:

• Sign up for the TS Alliance e-newsletter,TSC Matters: https://www.tsalliance.org/tsc-matters/
• Learn about donating to the TSC Biosample Repository: https://bit.ly/2RDcpuA
• TS Alliance 5-Year Strategic Plan: https://www.tsalliance.org/about-us/our-vision/
• 45th Anniversary Gala Photos: https://45gala.shutterfly.com/
• 45th Anniversary Gala Videos: https://bit.ly/2G7PzpJ
• TSC Now Episode 3: The 2019 International TSC Research Conference: https://bit.ly/2GccP5I
• 2019 Regional Conference Presentations: https://bit.ly/2sRhaIK
• Important Information About Changes to Access and Availability of Generic Everolimus and Afinitor: https://www.tsalliance.org/everolimus/
• TAND Initiative Resources:
  • TSC Now Episode 6: TSC-Associated Neuropsychiatric Disorders (TAND): https://bit.ly/38wyRfV
  • TAND Checklist: https://bit.ly/38pmzG3
• Meet Our New Team Members: https://www.tsalliance.org/about-us/our-team/