Dear TESS Supporters,
We have so many updates to share!
In November, we set out to raise an additional $150,000 by December 31st, and I am happy to say we raised over $200,000 in that short time. Thank you for your generous support! Read more about how your donor dollars are being put to work in our Impact Report.
February was Rare Disease month, and we shared rare disease facts all month on our social media platforms. Check out our Instagram feed.
And speaking of Instagram, Katie Couric shared a short film featuring my family and our journey with SLC13A5 Epilepsy. This film was funded by our partners at the Chan Zuckerberg Initiative. You can watch the short film and read about our journey here.
I had the honor of participating in a CZI panel discussion following a screening of the film No Ordinary Campaign. Journalist Ron Leuty was in the audience and his article about women in rare disease drug discovery landed us on the cover of the San Francisco Business Times.
We have also faced a few setbacks. Our partners at Taysha Gene Therapies need our help to get our gene therapy into clinical trials. We also almost lost TESS Superhero Lucas to unrelenting seizures, but thankfully he is home from the hospital. These occurrences highlight our urgent need for treatments.
I have never been more determined to make sure that a diagnosis of SLC13A5 Epilepsy comes with a treatment and a cure.
Read below for more.
Kim Lodato Nye
Founder, TESS Research Foundation