A Monthly E-Newsletter
March 2021
Dear TESS Supporters,

Welcome to our fashionably-late March Newsletter. I hope this update finds you doing well.

There is a book that I have read to my children a hundred times. It is called "We're going on a Bear Hunt". The family ventures into forests, rivers, and mud in search of a bear. They would prefer to go OVER the forest and UNDER the river, but in the end they have to go THROUGH it. The recurring line is:

"We can't go OVER it. We can't go UNDER it.
Oh no!
We've got to go THROUGH it!"

I think of these lines a lot. I wish I could somehow fly over the complications or tunnel under the sadness that SLC13A5 Epilepsy brings to my family's life. But in the end, I have to go THROUGH it. The saving grace is that I get to go through it with all of YOU! Thank you for staying with us and supporting us on our hunt for a brighter future for all families affected by SLC13A5 Epilepsy.

Read on for 5 ways to stay engaged, informed and inspired about the work TESS Research Foundation is doing.  

With gratitude,

Kim Lodato Nye
Founder, TESS Research Foundation
1
Zebra Baby Blankets
We have the BEST supporters! In February, we celebrated Rare Disease Day and mentioned that the zebra is the official symbol of the rare disease community.  When most people hear hoofbeats, they think “horses.”  But when a rare disease doctor hears hoofbeats, she thinks of their much rarer cousins: zebras. This inspired TESS donor, Jeri, to create zebra print baby blankets for our youngest diagnosed patients. We can't wait to wrap our TESS babies in some zebra love! We will post pictures on our social media channels.
2
We've Partnered with Ciitizen for a Digital Natural History Study
Do you have a loved one with SLC13A5 Epilepsy and live in the US? If so, join our Ciitizen platform. Ciitizen is a company that uses Machine-Learning to analyze Medical Records. This project gives patients increased access to and control over their medical data. The de-identified data will also accelerate the development of life-changing treatments and cures for SLC13A5 Epilepsy. Not in the US? Don't worry, we will be expanding to our International patients soon.
3
Global Genes Interviews TESS President
Thank you Global Genes for inviting us to share our mission! Global Genes is a leader in the Rare Disease space. Read their interview with TESS President, Kim Nye.
4
Join the CZI Rare As One Network
We are proud to be a Chan Zuckerberg Initiative Rare As One grantee organization! Patients are a powerful force in driving research for rare disease — we provide critical insights about our diseases and are fueling significant discoveries. As part of the Chan Zuckerberg Initiative’s Rare As One Network, we’ve learned from and worked with other patient-led organizations to accelerate progress on rare disease together, and we’re excited to see CZI continuing to support the rare disease community with a new funding opportunity. Learn more + apply
5
TESS Superhero of the Month
Jaylon was our March TESS Superhero of the Month! Visit his Superhero page to learn more about him or make a donation in his honor.
Help support TESS research, outreach and community. Make a donation today.
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