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A Monthly E-Newsletter 
February 2021
Dear TESS Supporters,

February 28 is Rare Disease Day.  Although epilepsy is not rare (1 in 26 Americans will develop epilepsy in their lifetime!), epilepsy caused by changes in the SLC13A5 gene is rare.  And so this week, we join with the rare disease community to remember that rare is not an excuse.  Rare is an opportunity.  

Rare disease is also the arena of heroes.  This month we highlight our hero physicians, scientists, and Superhero families.  From our clinicians launching our Natural History Study to our bench researchers publishing in premier journals. SLC13A5 physicians and researchers are collaborative.  They are brilliant.  And they are truly determined to improve the lives of families impacted by SLC13A5 Epilepsy.

Read on for 5 ways to stay engaged, informed and inspired about SLC13A5 Epilepsy.   And stay tuned next month for big research funding announcements.  

With thanks,

Kim Nye
TESS Research Foundation Founder and President
1
SLC13A5 Natural History Study Launches
What happens when a disease is so newly discovered that no one even knows the typical course of the disease over a person's lifetime?  The answer is: Launch a Natural History Study.  This study is key to accelerating the development of life-changing treatments and cures.  Families affected by SLC13A5 Epilepsy from around the world are invited to participate!  Learn more at clinicaltrials.gov
2
Research funded by TESS appears in Nature Publicaton
 
Congratulations to TESS grantee, Da-Neng Wang, and his team!  In the world of scientific research, it doesn't get more prestigious than a publication in Nature, a premier journal.  We are so honored to support Dr. Wang and his team at NYU.  A huge thank you to our donors who make funding top-notch scientific research possible.  Read their publication 'Structure and inhibition mechanism of the human citrate transporter NaCT' here.
3
Rare Disease Day is Tomorrow!
 
There are more than 7,000 rare diseases, including SLC13A5 Epilepsy.  1 in 10 people are affected by a rare disease!  Follow us and tag us on Facebook, Twitter, and Instagram to help us raise awareness! 
4
Fundraising success stories!
Thank you to our fundraising and advocacy superstars!  Teenage supporters  Alessandro and Daniele carved wooden spoons and sold bracelets.  Our Board Secretary Paula baked bread and scones.  Superhero Meredith's cousin Chris created a birthday fundraiser on Facebook.  Together they raised $2,000 dollars.  Thank you for raising awareness and much needed research funds!

Do you have a birthday coming up?  Facebook is one of the easiest ways to start a fundraiser for TESS.  To get started, go to https://www.facebook.com/fund/TESSresearch/ 
5
TESS superhero of the month
Each month we highlight one of our amazing TESS Superheroes.  This month we learned more about Yavi and his family.  Yavi's mom shared the following sentiments about receiving an SLC13A5 Epilepsy diagnosis: "When we finally got the genetic test results for Yavi it came as a relief. We finally had answers and I was able to talk to other families whose stories resembled ours. And to see their older children with good seizure management and doing things I had been told my child may never do, gave me hope."  Meet more of our Superheroes on our website.
Your gift makes all the difference in the lives of families.
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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 © 2021 TESS Research Foundation, All rights reserved.
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