E-Newsletter

August 2024

Hello TESS Supporters 👋

Welcome to the August edition of our high-five newsletter! This month we are recapping our 2024 SLC13A5 Research Conference & TESS Family Day.

We hosted our 8th SLC13A5 research conference August 2-3, and what a powerful, motivating, and packed two days! 110 in-person and virtual attendees, including fourteen TESS Superheroes from 11 families attended –- thank you for making the journey to Providence, Rhode Island! It was an impressive room full of SLC13A5 families, clinicians, researchers, industry members, advocates and more. Thank you for joining us!

Our attendees discussed important topics and formed new relationships. Our lived experience experts -- families -- sat at the same tables as scientific experts and shared insights that are helping to build an updated, patient-centered SLC13A5 research agenda.

Read our blog post for a more in-depth recap and watch our video highlight reel to feel the spirit of the day.

Quick highlights below!👇

Warmly,

Dr. Tanya Brown

TESS Scientific Director

A record-breaking number of TESS Superheroes came from around the world with their infectious smiles and shining personalities in tow. They formed new friendships, strengthened old friendships, and melted many hearts!

Our scientific community, including researchers, clinicians, and industry members, shared research updates, formed new connections with other members of the TESS community, learned from families what life is like for our TESS Superheroes, and discussed future research priorities for SLC13A5 Epilepsy.

Parents, siblings, caregivers, grandparents, aunts, and uncles accompanied their TESS Superheroes to meet other families and members of the scientific community, some for the very first time. They easily engaged in conversation and understanding, shared laughter and tears, and traded caregiving tips and tricks.

TESS relies on a dedicated team of staff, Board of Directors, Scientific Advisory Board members, and Family & Community Ambassadors to fulfill our mission. Representatives from each of these groups attended and it was great to have so many members of Team TESS in the same room!

Huge thank yous to PCORI, The Doyle Foundation, Ultragenyx, SK Life Science, and Taysha Gene Therapies for supporting our conference! You made our conference and family day possible!

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