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E-Newsletter

April 2022

Dear TESS Supporters,


There has been an exciting flurry of activity lately at TESS Research Foundationnew families diagnosed, new grants awarded, several conferences on the horizon, and clinical trials imminent.


When my son Colton was born 8 years ago and it was clear that he had SLC13A5 Epilepsy, my brain unwittingly started creating a list of all the things that he would NEVER do: never graduate from high school, never live independently, never even dress himself, and never speak the words 'I love you mom'. The NEVERs list was long and depressing. But the impact TESS Research Foundation is making and the tangible hope we are creating is undeniable. The next mom who has a child born with SLC13A5 Epilepsy will have a shorter list of NEVERs...and a longer list of "can-do's."


I hope you will take the time to read our impact report. We are certainly grateful for all the families, donors, doctors and researchers who make our work possible. Together we are unstoppable. 


Yours always,


Kim Lodato Nye

Founder, TESS Research Foundation

1

Wow! Read our Impact Report

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Thank you, TESS community, for helping us improve the lives of families affected by SLC13A5 Epilepsy!


In the past year we have helped more families receive a genetic diagnosis, built a network of researchers around the world, and empowered more donors to be a part of the cure for families with SLC13A5 Epilepsy.


Read more in our 2022 Impact Report and celebrate all we accomplished together over the past year.

2

Attention Clinicians and Families:

Join us June 16

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What does a gene therapy clinical trial look like? What does SLC13A5 Epilepsy look like over the course of a child's life? What medications are working better than others right now?


We are excited to be on the cusp of clinical trials for SLC13A5 Epilepsyso excited that we are hosting a hybrid conference on June 16th, 2022 to prepare our clinical and family community for upcoming trials! Join us virtually or in-person in Dallas by registering here. You can find more information on our website.

3

Our research community asked. TESS answered.

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Congratulations to Dr. Geoffrey Chang at University of California San Diego! TESS Research Foundation awarded Dr. Chang a TESS Infrastructure Grant to develop a new research tool for the SLC13A5 community.


Dr. Chang and his team are developing nanobodies—a key tool used to recognize the NaCT protein. These nanobodies will help the research community answer important scientific questions. Nanobodies can help identify when and where NaCT is found in the body and in which specific cells. We are grateful to add Dr. Chang to our research community! To learn more about him and his team’s work, click here.

4

All about Neurons!

Ready to learn about more science? Head over to the Science Simplified blog to learn about neurons!


Thank you to Sydney Wolfe, a recent neuroscience graduate from Washington State University, Vancouver for writing this great article. She describes the different parts of a neuron and how neurons communicate with one another. You can read the full post here. 


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

5

Meet Rowan, a TESS Superhero of the Month

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Why do we do what we do? To make life better for TESS Superheroes like Rowan!


Five fun facts about this sweet guy:

  • Rowan shares his mom and dad’s love for musicals, his favourite song being “Welcome to the Rock” from the musical Come From Away. There are endless giggles and smiles when this song is on.
  • Rowan loves being in the water – pools and baths are his favourite and he could spend all day just splashing around.
  • His best friends are his cousins, Connor and Jackson! They have given him the nickname “Baby Ronit” (Connor can’t quite say Rowan just yet!).
  • The easiest way to get Rowan to participate in tummy time is to have his dad dance and sing around in front of him. We are guaranteed to get some good tummy time this way!
  • Rowan is starting to become aware that he has a cat named Latte and is very interested in whatever Latte is doing. Latte could care less about what Rowan is doing but always keeps a watchful eye on our little guy.



Go to Rowan's page to learn more about his medical journeyhe has been through more than any kid should in his first year of lifeor to make a donation in his honor.

Meet more TESS Superheroes from around the world...

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TESS Superhero Aubrey lives in Canada, loves piano music and is a total daddy's girl. Learn more about Aubrey and her journey here.

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TESS Superhero Alice lives in Luxembourg. She loves water, buses, and school. Learn more about Alice and her family here.

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TESS Superhero Halldóra lives in Iceland with her mom, dad and baby brother... plus a dog (named Tess!) and cat. Read more about her medical journey here.

In case you missed it...

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Congratulations to SLC13A5 Researcher, Dr. Naomi Dirckx!


TESS Research Foundation partnered with Uplifting Athletes, a nonprofit organization dedicated to serving the Rare Disease Community, to support young research investigators focused on rare genetic and rare muscular and neurological disorders. 


Read more about our joint grant award here.

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Thank you, Chan Zuckerberg Initiative Rare As One project!


CZI awarded TESS an additional $150,000 capacity-building grant and continued engagement with the RAO network (which now includes 50 patient-led organizations in the rare disease space) for another year!


Read the full post here.

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Meet Lindsay Okamoto, Our TESS Development Director!


We are so grateful to have Lindsay join our TESS Team. This position is made possible by our capacity building grant from CZI.


Read more about what inspires Lindsay here—and feel free to reach out if you have a fundraising idea or would like to make a gift to TESS!

On the Science Simplified Blog

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Did you ever wonder how scientists choose which research model to use?


Flies, fish, mice, and more—these model systems help us drive drug discovery.


Read our TESS Scientific Director's Science Simplified blog post to learn about different research models and how scientists pick which one to study!


Read post here.

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What’s all the fuss about RNAseq?


Thank you to Erin Saito for writing this blog about RNAseq! Erin breaks it down to the basics so we can all learn what RNAseq is and how it is used in research.


Erin is currently a Cell Biology and Physiology PhD candidate at Brigham Young University.


Read post here.

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Science is complicated-that’s why we partnered with the Dravet Syndrome Foundation to share how to read a scientific paper!


As a three-part series within Science Simplified, Drs. Brown and Hood walk though the different parts of a research article, how to break down the information, and how to critically assess an article.


Read the first post here.

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OUR MISSION:
Improving the lives of those impacted by SLC13A5 Epilepsy (a Citrate Transporter Disorder) through research and community.


Our mailing address is:
PO Box 53
655 Oak Grove Ave
Menlo Park, CA 94026
TESS Research Foundation is proud to be a GuideStar Platinum Nonprofit.
TESS Research Foundation is a 501(c)(3) tax-exempt public charity.
Tax ID Number 47-3108868

Copyright © 2022 TESS Research Foundation, All rights reserved.