Dear TESS Community,
I hope that this letter finds you well. Each year, I look forward to writing to you and reflecting on the progress TESS Research Foundation has made and the impact you’ve had on the lives of children and families affected by the devastating neurological disease, SLC13A5 Epilepsy.
We founded TESS Research Foundation five years ago to fund research, create disease models, accelerate the development of therapies and a cure, and support families with information and community. Our early investments paid big dividends with five key advances:
- Taysha Gene Therapies (a major Biotech company) added our SLC13A5 gene replacement therapy to their drug development pipeline. Typically this step toward a cure takes decades, but we did it in under six years.
- TESS Research Foundation was one of only 30 nonprofit organizations to receive a $450,000 operations grant from the Chan Zuckerberg Initiative Rare As One Project. While these funds cannot be used for research, they have allowed us to significantly strengthen our internal operations.
- Our multi-site Natural History and Biomarker Discovery Study began at Stanford in collaboration with Brown and UTSW to better characterize the course of the disease and is crucial to advancing drug treatments into clinical trials.
- TESS research grantees created a Patient-Derived Disease Model System that will be ready to screen drugs by the Spring.
- We launched a Machine-Learning Medical Records Analysis with Ciitizen (a start-up company) to give patients increased access to and control over their medical data.
Our TESS Community is eternally grateful for your support in these achievements. Our affected families continue to show how incredibly resilient they are. When our in-person Dallas Family Conference pivoted due to COVID-19, our families rose to the occasion and joined us for a virtual Family Day, including the most attendees to date from around the world.
Our flagship Research Roundtable moved online with a record number of doctors, researchers, and industry members attending. With determination, our research grantees have kept their labs open throughout the pandemic and continue to move their SLC13A5 projects forward.
You, our SLC13A5 Community, have launched Facebook fundraisers, shopped in our website store, followed us on social media, and continue to support our efforts to cure this disease. We are grateful, hopeful, and always determined. We have made so much progress, and we need your continued support now more than ever before.
On behalf of the TESS Research Foundation Board of Directors, Scientific Advisors, and affected families, I send you much love and gratitude.
Kim Lodato Nye
TESS Research Foundation Founder and President