🙌 💜 High Five from TESS! 💜 🙌

E-Newsletter

January 2024

Hello TESS Supporters,

Happy New Year!

As we celebrate another year of achievements, milestones, and unwavering support, I am ready to see what 2024 has in store for the TESS community: further progress toward a clinical trial, new ideas from our new Board members, and our SLC13A5 Research Conference and TESS Family Day on August 2-3.

Your commitment and dedication have shaped TESS Research Foundation into what it is today and I want to take a moment to celebrate the success of early diagnosis in the TESS community. Last year, we met a TESS Superhero who was not diagnosed with SLC13A5 Epilepsy until he was 26 years old. We also were introduced to a TESS Superhero who received his diagnosis within the first few weeks of his life! How incredible is it to see these changes in diagnostic odysseys? TESS Research Foundation has worked hard to ensure SLC13A5 Epilepsy is on genetic testing panels, because an earlier diagnosis can lead to early-intervention treatments, giving newly diagnosed families an edge that didn’t exist 10 years ago.

Another success that needs a round of applause is that we fully met our year-end fundraising goal of $225,000! We are blown away by your generosity and are truly grateful for our dedicated community of supporters. YOU are helping drive research forward and improving the lives of our Superheroes and their families. Thank you so much from all of us on Team TESS.

Read on to learn more about our recent activities and to see how you can get involved for Rare Disease Day next month.

Wishing you all a happy and healthy 2024!

Yours always,

Kim Nye

Founder, TESS Research Foundation

$225,000 Raised!

We want to extend a huge thank you to our donor community for helping us reach our year-end goal of $225,000! This season, we welcomed 29 first-time donors and 37 loyal donors increased their giving. Your support means the world to us and allows us to further our patient-centered research agenda in 2024. We are committed to changing the trajectory of SLC13A5 Epilepsy and YOU are making this possible.

Stayed tuned throughout the year for research updates!

Rare Disease Day is Coming!

Rare Disease Day is coming and we're gearing up to make a difference! Show your support for Rare Disease Day by rocking our exclusive I 💜 RARE RESEARCH merch! Order yours on Bonfire by February 4th to ensure it arrives before the big day on February 29th. A portion of your purchase will be donated back to TESS. Let's unite for a cause that matters!

Order now so your merch arrives in time!

Introducing Our New Board Members!

We are honored to welcome Megan Gilbert, MBBS.FRANZCP; Don Neault; Rich Windisch, JD; and Janet Wojcicki, PhD, MPH, to the board and cannot wait to see what great skills and insights they will bring to our TESS community. Welcome to Team TESS!

Read their individual bios on our team page.

Interview with Kelvin De Leon

TESS partners with many researchers to better understand the many different components of SLC13A5 Epilepsy. Kelvin De Leon is a PhD candidate in the Neuroscience Graduate Program at Brown University. We are excited to share Kelvin's story with you all.

Read his full interview here.

Meet Scott, TESS Superhero of the Month

Scott is our TESS Superhero of the month! Scott is 27 and lives in Australia.

Learn more about Scott on his permanent Superhero page.

Meet more TESS Superheroes from around the world...

Klaire is 2 and lives in the US. Here are some fun facts about Klaire:

Her first name is actually Ella.
She is very good at sign language.
She loves to swim.
She loves attention from any and everyone!
She loves her big brother Trevor!

Enzo is 15 and lives in France. Here are some fun facts about Enzo:

Enzo's favorite color is orange.
Enzo loves listening to music.
He loves motorcycles.
He likes going to restaurants and enjoys eating cheese.
Enzo loves the water.

Mom Mondays

Executive Director & Founder, Kim Nye, and Operations Manager, Amber Black, launched Mom Mondays in November for Epilepsy Awareness Month to talk about SLC13A5 Epilepsy and being rare disease moms! They've had so much fun answering your questions that they have continued to release weekly episodes.

Watch the latest episode here.

TESS Attended AES

It was great to connect with our community, other patient advocacy groups, clinicians, researchers, and members of industry at the American Epilepsy Society Meeting in December!

We are so grateful for our teams at UT Southwestern, Brown, and Stanford for all the amazing work they are doing. There were seven posters presented about SLC13A5 Epilepsy from members of our research community -- a true representation on all the amazing work being done!

Probably Genetic Partnership

We are excited to announce our new collaboration with Probably Genetic as a patient-finding partner for our community.

If you or anyone you know is looking for a trusted genetic testing resource, Probably Genetic runs a no-cost, low-barrier testing program for individuals experiencing seizure- and developmental delay-related disorders.