A Monthly E-Newsletter
August 2021
Dear TESS Supporters,
As summer draws to a close, and kids head back to school, I am reminded of how hard Back-to-School Night can be for families of children affected by SLC13A5 Epilepsy. 
Our children require extra supports in school. From walkers and wheelchairs to special education classes and adapted curriculums, the list of differences between our children and a typical child can be overwhelming. Back-to-School Night is supposed to be an exciting night of new beginnings. Candidly, for me it serves as a reminder of how far behind my 8-year-old son Colton is compared to his peers. And it breaks my heart that for my daughter Tessa, now a senior in high school, her Back-to-School Night will focus on conservatorship instead of college. 
This is the experience that drives me to work tirelessly to help change the outcomes for my kids and others who will be diagnosed with SLC13A5 Epilepsy. New treatments are progressing, we are raising awareness about important scientific breakthroughs, and our TESS families around the world are united by a common cause. If, like me, the tradition of back to school is tinged with a little grief, I want to send a message of love and support to you. While our children's education has not been a straightforward path, we are together building a brighter future for our children. 

Read on for 5 ways to get engaged, informed, and inspired about SLC13A5 Epilepsy as we head into fall.  Stay tuned next month for a big research collaboration announcement!

With gratitude,

Kim Lodato Nye
Founder, TESS Research Foundation
Gene Therapy Progress!
Big News for our SLC13A5 Families in Europe! Taysha Gene Therapies receives Orphan Drug Designation for TSHA-105 for the treatment of Epilepsy caused by SLC13A5 Deficiency from the European Commission.

TSHA-105 has Pediatric and Orphan drug designation in the US, but now the European Commission has awarded Orphan Drug Designation as well. What does this designation mean? It means that the European Medicines Agency (EMA) finds the SLC13A5 gene therapy treatment as potentially promising and like the US, EMA is eager for European citizens with rare diseases to have access to specific and effective medicines.

TSHA-105 is not yet available for patients, but we are grateful for every stage of progress. You can read the full press release HERE.
Science Simplified Blog
Learn about genetic mutations in this month's Science Simplified Blog!

We are continuing to learn about scientific topics relevant to SLC13A5 Epilepsy with our Science Simplified blog. Thank you to Katie Hoff, a Molecular Biology graduate student at the University of Colorado Anschutz Medical Campus for writing this month's blog post about genetic mutations.

Katie makes the complicated field of genetics understandable. For example, she writes: "DNA is the instruction manual that our bodies use throughout the course of our lives. However, sometimes the instructions get altered. Errors in our DNA are known as mutations, and these mutations ultimately result in our bodies being given different sets of instructions." You can read the full post HERE

If there is a topic you want included on the blog, let us know! Email our Research Program Manager, Dr. Tanya Brown: tanya@tessfoundation.org.
Your Research Impact
The SLC13A5 Natural History Study is made possible by YOU. Thank you to the International Families who continue to enroll in our Natural History Study and to the donors who make this study possible!

Dr. Brenda Porter, MD, PhD and her team at Stanford continue to educate and enroll SLC13A5 Families from around the world in this important study that examines the course of the disease over time.

If you have questions about this study or would like to enroll, please email our TESS Research Program Manager, Dr. Tanya Brown: tanya@tessfoundation.org
Monthly Donor Spotlight. Thank you, Brianna!
We're looking for monthly donors! Can you join us?

Everyone who has been touched by SLC13A5 Epilepsy knows there is so much work that needs to be done. TESS Research Foundation is the only organization in the world dedicated to SLC13A5 Epilepsy. To help ensure that TESS can continue to expand our work, we are looking for 10 new monthly donors. Our monthly donors like Brianna believe in our vision of better treatments and cures for SLC13A5 Epilepsy.

Brianna, a monthly donor since 2019 shares: "My son, Jackson, has SLC13A5 Epilepsy. I am inspired to give in order to help TESS Research accelerate the development of a cure for Jackson and all children with SLC13A5 Epilepsy."

You can join Brianna in becoming a monthly donor but by visiting https://www.tessresearch.org/donation/ and clicking "Make this donation monthly".

Contact Kim with any questions: kim@tessfoundation.org. We are grateful to everyone who makes TESS Research Foundation's work possible!
TESS Superhero, Robbie!
Whose lives are you impacting? The lives of kids like Robbie, our August Superhero of the Month.

Here are a few fun facts Robbie's parents shared with us!
  • Age: 8
  • Homestate: Texas
  • Robbie loves tablets!
  • His favorite cartoon is Super Why!
  • He loves loud music
  • He enjoys playing with his daddy and he loves to spend time with his family!
  • He is very social and likes to be surrounded by people!

Learn more about Robbie on his Superhero page.
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