Dear Friends,
Thanks to your generosity, we successfully maximized the $100,000 Giving Tuesday match from the Jeff Jehlik Memorial Fund!
Your donation makes a direct impact on advancing A-T research, driving us closer to meaningful therapies – and ultimately, a cure – for all children and young adults living with A-T.
In our last update, we shared news about the Gene Therapy for A-T workshop. We are continuing to hear from researchers as they are forming new collaborations and sharing approaches to accelerate this work. But gene therapy is just one piece of the puzzle. Thanks to your support, we’re forging ahead on multiple fronts:
- Repurposing existing drugs to accelerate the path to treatment
- Leveraging cutting-edge technology
- Partnering with pharmaceutical and academic teams to launch clinical trials
- Exploring innovative brain scan techniques to uncover treatment clues
- Expanding our Global A-T Family Data Platform by collecting blood for biomarker studies, saliva for whole-genome sequencing, and other types of data – all being accessed by researchers around the world.
Honestly, we can’t remember a time filled with more hope and concrete plans coming together to find treatments to help people with A-T of all ages. And none of this would be possible without YOU.
Wishing you and your loved ones a joyful and meaningful holiday season!
Thank you again,
Jennifer
Jennifer Thornton, Executive Director
From December 2, 2024
This Giving Tuesday, you have a chance to double your impact in our fight against ataxia-telangiectasia (A-T)! In loving memory of their son Jeff, who battled A-T and passed away nine years ago, Greg and Kim Jehlik are providing a wonderful $100,000 matching challenge through the Jeff Jehlik Memorial Fund.
When Jeff was diagnosed with A-T, his family turned their love for him into action, joining forces with other families to push for progress. And because of their determination – and support from people like you – the world looks different now. What seemed impossible then is now becoming a reality!
Just two weeks ago, scientists and clinicians from around the world reported exciting progress at our Gene Therapy for A-T Workshop in Boston, bringing more hope than ever. An antisense oligonucleotide gene therapy is being tested now in two children with A-T with promising results. And research teams around the world are launching additional initiatives so that several gene therapy technologies, as well as other approaches, can be applied to every child and young adult with A-T as possible.
The meeting brought fresh energy and collaboration. Researchers not only explored ways to safely and efficiently replace or correct the A-T gene in our kids but made sure needed research tools were in place – things like cell lines made from A-T kids, brain tissue samples, in vitro assays, animal models, data platforms, neuroimaging, biomarkers, wearable devices, clinical scales, and natural history studies.
“We’re standing at the edge of major breakthroughs with multiple approaches, and we’re confident this match will enable researchers to move more quickly,” Greg Jehlik said. “We want the recent progress to be expanded to a larger scale and rapidly translated into therapies that can improve the lives of A-T kids at all ages.” Kim added, “Although Jeff is gone, all A-T families remain in our hearts and prayers, and we are confident that treatments and a cure are on the horizon through the A-T Children’s Project.”
Please join the Jehlik family in honoring Jeff’s life and legacy this Giving Tuesday by keeping our momentum going. Every dollar you give between now and Friday, December 6th will be matched dollar for dollar, up to $100,000.
Give Today. Be Part of the Match. Be Part of the Cure.