Strengthening our Community!

E-Newsletter

June 2022

Dear TESS Supporters,

When Tessa was born and having hundreds of seizures a day, I sometimes felt like we were on an island. There were many things that our family needed: care, treatments, answers, and a community. In the years that followed, especially after Colton’s birth and the founding of TESS Research Foundation, I realized how important community truly is. A community of families who relate to one another’s experiences, share ideas, and offer recommendations. A community of research scientists and clinicians who are relentless in seeking to better understand SLC13A5 Epilepsy and care for our kids. A philanthropic community whose financial gifts drive research for treatments and a cure.

Community is a critical piece of our story and what makes our work possible. Over the past month, we celebrated SLC13A5 Epilepsy awareness day and were thrilled to see YOU sharing photos and information about TESS. We attended a convening of CZI - Rare as One grantees. And this week, we held our Clinical Research Conference and heard updates from clinicians, families, researchers, and industry partners.

Thank you for being the best part of our TESS Community. I am ever-grateful for all that we have accomplished together and all that is yet to come.

Yours always,

Kim Lodato Nye

Founder, TESS Research Foundation

2022 Clinical Research Conference: Clinicians, Families, Researchers, and Partners, Oh My!

Thank you to all who attended, presented, and shared at our hybrid Clinical Research Conference on June 16! We had 30 in-person attendees in Dallas and more than 45 participants who attended virtually.

It was amazing to hear from treating physicians, care teams, and researchers on the latest updates on SLC13A5 Epilepsy, from families who shared their experiences caring for an affected child and participating in clinical trials, and from Taysha Gene Therapies, an industry partner. Thank you to Rachel Bailey and UTSW for help planning and hosting the event. The highlight was when we had a live neurologic exam and introduced our TESS community to some of our TESS Superheroes.

Next up: SLC13A5 Research Roundtable at IST-Austria September 7-8! More information coming soon.

Connecting with our Rare Disease Friends

After two+ years of monthly zoom meetings and trainings, more than 200 members of the Chan Zuckerberg Initiative - Rare as One Network met in San Diego for CZI-RAO’s annual meeting.

Three days together were filled with great conversations, listening to our fellow grantees share about their experiences, and connecting with our colleagues in the rare disease space. We also presented a poster about TESS Research Foundation and our mission of driving research and supporting families affected by SLC13A5 Epilepsy.

Thank you, CZI, for providing yet another opportunity for us to connect, learn, and grow! Learn more about our partnership with CZI here.

Read Our Latest Science Simplified Blog Post!

Scientists have a lot of questions about proteins! Proteins perform a variety of different roles that help our bodies function healthfully. Individuals affected by SLC13A5 Epilepsy have changes to their SLC13A5 gene – which prevents the NaCT protein from working properly.

Read more about proteins and how scientists use immunohistochemistry to visualize proteins in this month’s Science Simplified Blog Post!

Want a specific topic covered? Let us know! Email our Scientific Director,

Dr. Tanya Brown: tanya@tessfoundation.org.

Meet Leonardo, a TESS Superhero of the Month

Our Superheroes inspire our work every day, in every way! Meet Superhero Leonardo, who lives in Brazil, loves biking with his mom, watching soccer with his dad, and is delighted when someone sings to him! Learn more about Leonardo on his permanent page or make a donation in his honor.

Become a New Monthly Donor Today!

Every gift makes a difference to our ability to fund research and to support families affected by SLC13A5 Epilepsy. Monthly donations are especially helpful, as they provide ongoing funds and help with our planning of grant offerings, events, and other Foundation investments.

Thank you to monthly donors Amber and Michael Black, who share, “As parents of a toddler with SLC13A5 Epilepsy, we strive to do everything possible to help our sweet Rowan each day. One thing we do that drives us and keeps us optimistic is contributing monthly to TESS Research Foundation, to help fund a treatment or cure that will help make Rowan's life the best it can be.”

Join Amber and Michael and become a monthly donor: visit our donat ion page and click “donate online monthly.” Email lindsay@tessfoundation.org with any questions. Thank you to all our monthly donors and to everyone in our donor community!