Momentum Starts With Us | A Founder’s Letter
By Jennifer Martinez, Co-Founder and President, ATRX Research Alliance
“Momentum starts with us. The science is moving, and together, we can give it the resources to move with the urgency our children need.”
Five years ago, we began building ATRX Research Alliance with a belief that families affected by ATR-X syndrome could help change the future of research.
Since then, our community has helped bring ATR-X research into therapy development. Today, Drs. Allison Bradbury and David Picketts are moving gene therapy research forward.
But scientific progress requires sustained investment. And what comes next depends, in part, on what we do together.
Building a Future Together
When Ben and I started this work, we made the first investment ourselves.
Other founding families stepped forward and did the same. We believed then, as we do today, that meaningful progress begins when those of us closest to this disease come together and invest in its future.
That investment looks different for every family. What matters isn’t the size of any one contribution, but what we can accomplish together.
ATR-X syndrome is exceptionally rare, with an estimated 250 to 500 known individuals worldwide. With such a small patient population, dedicated research funding is difficult to secure.
We cannot assume that others will prioritize this research for our community. We must continue building the partnerships, participation, and financial support needed to move it forward.
That is why our year-end campaign is called Momentum Starts With Us.
Advancing ATR-X Gene Therapy Research
Our current goal is to raise $350,000 to support preclinical ATR-X gene therapy development.
Preclinical research focuses on developing and evaluating potential therapeutic approaches through laboratory studies, generating the evidence needed to guide future development.
Parts of this work are already moving forward with other funding. Our investment would provide dedicated laboratory personnel and resources to help researchers maintain focus, continuity, and momentum.
As Dr. Allison Bradbury explains:
“We’ve secured important funding that will allow us to continue our ATR-X gene therapy studies over the next year. But developing promising treatments requires sustained investment, and securing long-term research funding takes time. Support from the ATR-X community can help us maintain momentum while we pursue larger funding opportunities.”
Dr. Allison M. Bradbury, MS, PhD
Principal Investigator, Center for Gene Therapy, Nationwide Children’s Hospital
Associate Professor, Department of Pediatrics, The Ohio State University
Every Family Has a Role in Moving Research Forward
Participation in fundraising looks different for every family.
It can be a personal gift, a fundraiser in your child’s name, sharing our story with someone who believes in developing treatments for rare diseases, or helping us reach new supporters.
Every act of participation helps strengthen our community and the foundation we’ve worked so hard to build.
This giving season, we invite you to join us in any way that feels comfortable and meaningful for you.
Five Years of Building. A Future Worth Fighting For.
We have spent five years building the foundation. Now we have an opportunity to help accelerate the research already underway.
For families living with ATR-X today, every minute matters.
Momentum starts with us. Together, we can help accelerate research and work toward changing the future for our children.
Thank you for being part of our community.
With gratitude,
Jennifer Martinez
Co-Founder and President
ATRX Research Alliance
Faith | Hope | Urgency
Be Part of the Momentum
Your support can help advance preclinical ATR-X gene therapy research.
Make a gift, share our mission, or subscribe to receive updates on the research and progress ahead.
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