A Monthly E-Newsletter
June-July 2021
Dear TESS Supporters,

Awareness Day made my heart burst, melt, and skip a beat all at once. Friends, family, neighbors, doctors, scientists, companies, celebrities and pets held up their signs, wore their wristbands, bought t-shirts, donated and showed their πŸ’œ for someone with SLC13A5 Epilepsy.

Thanks to all of you, we are moving at warp speed on all fronts. Research teams funded by TESS are presenting their groundbreaking SLC13A5 data at renowned conferences. Our Education programs are growing with a new Science Simplified blog. And we are awarding significant funding to esteemed research groups in our quest to accelerate the development of better treatments and a cure for SLC13A5 Epilepsy.

With love and gratitude,

Kim Lodato Nye
Founder, TESS Research Foundation
We reached 20 Million people on SLC13A5 Awareness Day!
Vanessa Bryant shared our Awareness Day sign!
Pau Gasol goes all in for TESS!
Claire Holt spreads the love!
People around the world care about families affected by SLC13A5 Epilepsy! Thank you to all of you who wore TESS wristbands and shirts and held up TESS signs. Movie stars, NBA and WNBA players, models and entrepreneurs, including Vanessa Bryant, Pau Gasol, Claire Holt, Sabrina Ionescu, and Jusuf Nurkic posted their support and helped us reach a broad audience. Keep the momentum going and help us raise awareness year round!
Dr. Bailey presents at ASGCT
Rachel Bailey, PhD continues to work tirelessly to create a gene therapy for people with SLC13A5 Deficiency. Her dedication to our community includes presenting her data to peers at key conferences. On May 13 (our Awareness Day!), she presented to the American Society of Gene + Cell Therapy. Read more about Dr. Bailey HERE.
Launched: TESS Science Simplified Blog
Do you love science but prefer it simplified? You are in luck! We have a new section on the TESS website called β€œScience Simplified.” This is run by our Research Program Manager, Dr. Tanya Brown. She partners with other scientists to make scientific topics relevant to the TESS community more accessible. We started with a blog post on gene therapy. The post is up now if you want to check it out! If ever you want to learn more about a topic on the blog post or have suggestions for future topics, please reach out to Dr. Brown: tanya@tessfoundation.org
Dr. Da-Neng Wang Awarded TESS Research Grant
Your donation dollars are fueling research and finding treatments! TESS Research Foundation awarded 1.5 years of follow-up funding to Dr. Wang and his team at NYU! Dr. Wang’s research will work to identify the structure of mutant NaCT- the citrate transporter that is changed in our kids with SLC13A5 Epilepsy. This research will be instrumental to help identify specific issues with NaCT and open avenues for therapeutic targets in the future. Thank you for making this research possible! 
Meet Ellie, our June Superhero of the Month
TESS Superheroes like Ellie are the passion behind our work. Here are some fun facts Ellie's family shared: 'Ellie is now 5 years old and obsessed with Mickey Mouse and the gang! She loves to be in any type of water. She is a jokester and likes to make people laugh! Music is her jam. And although her verbal skills are limited, she is super bossy and will not take no for an answer.' Each month we highlight one TESS Superhero on our Social Media channels. If your loved one with SLC13A5 Epilepsy would like to participate, please let us know!
Help support TESS research, outreach and community. Make a donation today.
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