🙌 High Five from TESS!

E-Newsletter

April 2024

Hello TESS Supporters 👋

Welcome to the April edition of our high-five newsletter. We've been busy and have some exciting updates to share with you!

Here is the quick version and you can scroll down to get all the details:

Join us in celebrating Dr. Naomi Dirckx being awarded $100,000 for SLC13A5 Research!
Mark your calendars for our upcoming Derby Day fundraiser.
Our Founder & Executive Director, Kim Nye, has been appointed Vice Chair of the COMBINEDBrain board.
Dive into our latest Science Simplified and learn the difference between a gene therapy and a cure.
Read all about Jackson, our Superhero of the month!

We couldn't do all this amazing work without our incredible TESS community! We are endlessly grateful for all of you.

Warmly,

Team TESS

TESS Research Foundation

TESS Awards $100,000 Research Grant

Together with CURE Epilepsy, we are thrilled to award Naomi Dirckx, PhD, a one-year $100,000 research grant! Funded generously by CURE and by TESS donors Mary and Mark Stevens, the grant will enable Dr. Dirckx to better understand how SLC13A5 mutations affect metabolic processes in the brain.

Dr. Dirckx is an assistant professor at Washington University - St. Louis and the

Stevens Family Scholar in SLC13A5 Research. Congratulations!

Derby Day is Almost Here

Our annual Derby Day Fundraiser is on Saturday, May 4! This is our largest community event, featuring Derby games, auctions, Surprise Boxes, and a live viewing of the 150th Kentucky Derby. Our hope is to raise $225,000 for our priority research and family support programs. Thanks to our sponsors and local businesses, we are on our way to meeting this goal!

There is still time to donate, become a sponsor, and RSVP to attend; please contact lindsay@tessfoundation.org for ticket information and sponsorship opportunities!

TESS Continues Cutting-Edge Partnerships

We are deeply involved with the broader rare disease and epilepsy communities. TESS remains cutting edge by collaborating with outside organizations that align with our goals and mission. Including AES, ASGCT, CZI, ELC, NORD, and REN.

Most recently, our Founder & Executive Director, Kim Nye, was appointed Vice Chair of the COMBINEDBrain board. COMBINEDBrain is an organization devoted to speeding the path to clinical treatments for people with rare genetic neurodevelopment disorders by pooling efforts, studies, and data. Congratulations, Kim! We are so excited to see what you will bring to COMBINEDBrain.

See a list of our partners here.

Science Simplified

Our latest Science Simplified highlights the differences between a gene therapy clinical trial and a cure.

Read the latest article authored by Zollie Yavarow, PhD, MA, a Postdoctoral Fellow at COMBINEDBrain and independent consultant with Zaris Consulting!

TESS Superhero Check In: Jackson

We thought it would be fun to check in with our Superheroes to see what they've been up to. Jackson is our TESS Superhero of the month! Jackson is 5 and lives in Oklahoma.

Learn more about Jackson on his permanent Superhero page.

In case you missed it!

Saturday Story:

Evelyn and Lucas

Stories from members of the TESS community aim to give our followers a glimpse of what it might be like to love and care for someone with SLC13A5 Epilepsy.

We recently featured Evelyn and Lucas's journey in our Saturday Story feature and are excited to share Evelyn's story with you all.

Read the full story now.

Team TESS Tuesday:

Stephen Windisch

We recently featured Stephen Windisch, a TESS Family & Community Ambassador for our Team TESS Tuesday post!

Stephen is TESS Superhero Meredith's uncle. Together with Dr. Tanya Brown, Stephen writes Science Summaries for the family newsletters.

Read the full interview here.

Dr. Adriana Beltran's Publication: Novel Approaches to Studying SLC13A5 Disease

Dr. Beltran published a new review entitled "Novel Approaches to Studying SLC13A5 Disease" where she covers SLC13A5 expression and function in various cell types and highlights the power of induced pluripotent stem cell models (iPSCs) to study diseases, including SLC13A5 Epilepsy.

Read the review today.

Invitae Article:

Rowan's Story: Genetic Testing Brought Answers and Community

Receiving an early diagnosis was the first step in a lifelong journey with SLC13A5 Epilepsy and brought some answers and community to TESS Superhero Rowan's family.

We believe in early and accurate testing and Rowan's story highlights the importance of genetic testing.

Click here to read more.