20 Aug SLC13A5 Research Conference & TESS Family Day Recap
TESS Research Foundation hosted our 8th SLC13A5 research conference and what a powerful, motivating, and packed two days! We hosted 110 attendees both in person and virtually in Providence, Rhode Island on August 2-3, 2024. Fourteen TESS Superheroes from 11 different families attended – thank you for making this journey! It was an impressive room full of SLC13A5 families, clinicians, researchers, industry members, advocates and more. Thank you for joining us!
Key Takeaways
We had a discussion-based agenda and learned so much. Some of the key take-aways, captured in the graphic recordings below, are:
Connection is powerful.
- Families had time to connect with one another and the scientific community, some for the first time.
- The research community learned from our families what life is like for our TESS Superheroes, shared research updates, and took time listen to the research priorities that matter most to families.
SLC13A5 Epilepsy (citrate transporter disorder) is more than just seizures.
- TESS Research Foundation shared initial results from our TESS Family survey. Caregivers shared that seizure control, movement, and communication are top symptoms to address.
The SLC13A5 research community is making progress in many areas, from preclinical research models to identifying potential new therapeutics.
- Teams are characterizing SLC13A5 variants, understanding the NaCT protein, studying SLC13A5 animal models, and early stages of small molecule development.
The SLC13A5 Natural History Study (NHS) continues to make progress.
- The SLC13A5 NHS is important for understanding this disorder, for the development of new treatments, and important information to engage with potential industry partners.
- Our dedicated team of clinicians conducted visits on site with some families who had not been able to participate before.
TESS Research Foundation is a convener for the SLC13A5 community.
- TESS Research Foundation provides a platform for all those affected by SLC13A5 Epilepsy (citrate transporter disorder), for treating clinicians, for researchers, and for advocates to come together as partners.
- TESS hosts support groups for families and research roundtables for the scientific community, facilitates and helps fund research, provides accessible education materials to the community, and brings all partners together whenever possible to maintain connections and a strong community.
What’s Next?
Our attendees discussed important topics and had the opportunity to talk with new partners. Families–our lived experience experts– sat at the same tables as the scientific experts and discussed important topics that will help us build an updated, patient-centered SLC13A5 research agenda. TESS Research Foundation is using this information, graphic recordings created live during the event by ImageThink, worksheets completed by our in-person and virtual attendees, and our large group discussions to build an updated research agenda. The agenda will identify the key next steps we collectively need to address to move science from the lab into therapeutic application, to prepare our community for patient-centered outcomes research, and to develop targeted treatments for SLC13A5 Epilepsy (citrate transporter disorder).