E-Newsletter

March 2023

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.

Yours always,

Kim Lodato Nye

Founder, TESS Research Foundation

Our TESS Community is changing lives! Please read and share our latest Impact Report, and celebrate all that we are accomplishing together.

Thanks to each of YOU, who participate in our research studies, attend the monthly TESS family meetings, fundraise for SLC13A5 research, "heart" our social media posts, share your stories and photos, and most of all, are dedicated caregivers to your amazing kids!  You make our progress possible!

A must read!

Kim and TESS Research Foundation were featured in the San Francisco Business Times. Even though 1 in 20 people will be affected by a rare disease in their lifetime, it is often the parents of children with rare diseases who are driving drug development.

We are honored to be on this mission with the brilliant Nasha Fitter from FOXG1 Research Foundation, Tania Simoncelli from the Chan Zuckerberg Initiative and Yael Weiss from Mahzi Therapeutics. With every article that spreads awareness about TESS, SLC13A5 Epilepsy, and our funding needs, we are one step closer to better treatments for our kids! Please read and share.

In February, Kim Nye was a panelist at the CZI premiere of the No Ordinary Campaign film. The event also premiered a short film featuring Kim and her family, and Luke Rosen from KIF1A.org. The short film was later posted on Instagram by Katie Couric (!) in celebration of Rare Disease Day!

Thank you CZI for creating a film about Team TESS! And thank you Katie Couric for using your platform to raise awareness about rare diseases!

You can view the CZI video here.

Canadian Senator Rob Black, representing Guelph, Ontario, shared information about SLC13A5 Epilepsy and his family’s experiences with his colleagues on the senate floor.

Hearing about SLC13A5 Epilepsy awareness and our work at TESS Research Foundation within such an important public platform was exciting – and humbling! Watch today!

Meet TESS Superhero, Lucas!

• Age: 3
• Homestate: New York
• Itsy Bitsy Spider is Lucas’ favorite song.
• He loves high-pitched noises and often starts laughing hysterically when we empty the dishwasher.
• Christmas tree lights are his favorite.
• Lucas will refuse to make eye contact with his speech therapist and just looks away from her if she doesn’t sing to him.
• The pool is Lucas’ favorite summertime activity.



From long seizures to adoption, Lucas has been through a lot in his few years of life. Read more about his journey on his superhero page.

Callum is 5 and lives in the UK. Some fun facts about Callum:

1. Callum loves to be outside exploring or going for a ride on his trike or in the car.
2. He loves horse riding and swimming.
3. Callum's favorite animals are horses and pigs.
4. He loves school, especially messy play and riding on his bus!
5. Callum loves books, playing with cars and his ipad.

Biel is 5 and lives near Barcelona. Some fun facts about Biel:

1. Biel really likes stories, tv, and videos on Blippi's YouTube channel.
2. Everyday Biel shows us he is happy.
3. Biel likes to go down the slide and play with sand, he really likes water & pools.
4. He loves to be with other children and gives lots of hugs.
5. When he started to stand but still didn't walk he climbed everywhere.

Roos is 10 and lives in the Netherlands. Some fun facts about Roos:

1. Roos loves to swim in the sea.
2. She loves to cycle with the wheelchair bike.
3. Hot chocolate with whipped cream is Roos' favorite even on a hot summer day.
4. Roos is very nice to her brothers and sister. Sometimes she likes to tease her sister and then is extra nice when her sister screams.

Read about TESS' research journey, with a focus on how close we are to a gene therapy and the challenges of bringing a clinical trial to reality.  

Special thanks to Sandra Abrevaya for the shout out: “(Kim) went from having ‘patient one’ and ‘patient two’ in her living room to finding all the other humans in the world who had it, to compiling all the data, to then developing a treatment — and she literally has a treatment... if you know anybody in biopharma who is interested in seeing a very, potentially, high-value epilepsy drug come to the market, please give them a call!" 

What is a rare disease? Any disease, disorder, illness or condition affecting fewer than 1 in 2,000 people is considered rare. With less than 200,000 diagnosed individuals worldwide, SLC13A5 Epilepsy is a rare disease. 

Zebras are the symbol of rare disease. When most people hear hoofbeats, they think of horses. The rare disease community thinks of their less common cousin -- the zebra! Check out our TESS zebras and rare disease facts.

TESS Research Foundation awarded a new grant to Prof. Avner Schlessinger at the Icahn School of Medicine at Mount Sinai.

Dr. Schlessinger and his team will use computational models to understand how SLC13A5 variants change the protein, and also to design potential small molecule therapeutics.

Congratulations, Dr. Schlessinger! And thank you donors for making TESS research grants possible!

Have you ever wondered what all those graphs in scientific papers are about?

Come learn about line graphs in our latest Science Simplified article! We walk through the basics of line graphs and an example of how they can be used in research.



Want a specific topic covered? Let us know! Email our Scientific Director, Dr. Tanya Brown: tanya@tessfoundation.org

Genetic counselors are an important part of care teams for genetic epilepsies such as SLC13A5 Epilepsy.

You can learn all about genetic counselors in our Science Simplified article. You can learn what genetic counselors do, why you might talk to a genetic counselor, questions to ask, and how to find a genetic counselor.

Have you ever wondered about all the different kinds of genetic sequencing used in genetic testing and what the differences are?

Baergen Schultz, our Genetic Counselor student intern from the Orphan Disease Center at University of Pennsylvania wrote about some of the different types of genetic testing available and what you can learn from them in her Science Simplified blog.

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