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Dear Kimberly,
Three-year-old TESS Superhero Klaire recently went 301 days without a seizure. This is a big deal for a child who has lived through hundreds of seizures beginning when she was not yet a day old. Her mom, Kelsey, shares:
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When Klaire was born, she had short “blue spells” where she would stop breathing. Her EEG later showed multiple prolonged seizures lasting approximately 20 minutes of every hour for days.
Getting Klaire’s seizures under control was our biggest challenge. After a lot of trial and error, we found a combination of drugs that helps. Klaire now takes multiple anti-seizure medications a day. She cannot talk, walk, or crawl, and works very hard during her physical, occupational, speech, and feeding therapies. Klaire is spunky, her smile is contagious, and she loves being with her big brother and all her friends at school.
Every day, we live with the unpredictability of not knowing when her next seizure may happen.
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Every family whose child has an SLC13A5 Epilepsy diagnosis has a unique journey. And yet, when their child is hospitalized with a seizure or struggles to eat, move, or communicate, families experience universal feelings of grief and fear. Thanks to strong science and our global research community, there are also glimmers of hope.
Your investment in research makes this hope possible.
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At Mt. Sinai (NY), Avner Schlessinger, PhD, and Paul Morgan, MD, are investigating how structural changes in the SLC13A5 protein affect its ability to transport citrate and how this leads to disease development. They are using a novel, integrative approach that combines advanced computational chemistry, machine learning, and rational drug design. Their goal is to accelerate drug discovery to correct genetic variations of the SLC13A5 gene and potentially restore its normal function. | |
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Your donation to TESS makes this research possible.
We share the same vision: for all children with SLC13A5 Epilepsy to lead healthy and independent lives.
Your donation can make this a reality.
Please help us raise $225,000 by December 31 by donating today. Your donation will be doubled and help unlock our $20,000 dollar-for-dollar match!
Thank you for your generosity.
Sincerely,
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Kimberly Nye
Founder and Executive Director
P.S. Can you make even more possible with a stretch donation this year?
P.P.S. If your donation and our email crossed in cyberspace, thank you for your gift!
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TESS Research Foundation improves the lives of those impacted by SLC13A5 Epilepsy by driving research, spreading awareness, and supporting our Superheroes and their families.
We will have succeeded when all children with SLC13A5 Epilepsy lead healthy and independent lives.
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BOARD OF DIRECTORS:
Kimberly Nye, Chair
Michael Black, Vice Chair
Kevin McDonnell, Treasurer
Adam Alberti
Courtney Alberti
Megan Gilbert, MBBS.FRACNZCP
Don Neault
Paula Gani Noah
Lee Scheuer
E. Robert Wassman, MD
Rich Windisch, JD
Janet Wojcicki, PhD, MPH
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SCIENTIFIC ADVISORY BOARD:
Matthew Bainbridge, PhD
Dawn Blessing, MBA
Dan Lowenstein, MD
Ana Pajor, PhD
Brenda Porter, MD, PhD
Hugh Rienhoff, Jr., MD
Grit Zahn, PhD
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TESS Research Foundation is a 501(c)(3) tax-exempt public charity. Tax ID Number 47-3108868 | |
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Copyright © 2024 TESS Research Foundation, All rights reserved. | | | | |
