Who We Are A-T Children's Project

Ataxia-telangiectasia (A-T) is a genetic disease that causes loss of muscle control and balance, cancer, lung disease and immune system problems in children & young adults, shortening their lives. The nonprofit A-T Children’s Project partners with academic and industry investigators worldwide – organizing and supporting innovative research, conferences, clinical teams, data platforms and biomarker development – to optimize disease management strategies, develop new treatments and find a cure.
A Message from the Founders
Anyone whose life is touched by ataxia-telangiectasia is changed forever. Whether the patient diagnosed is your child — or your niece, nephew, grandchild or friend — old assumptions have to be discarded and new realities accepted. The world is suddenly changed, and the future is most uncertain. It is time for making adjustments — physical and psychological — many of them agonizingly difficult.
At the A-T Children’s Project we understand how you feel. When two of our sons were diagnosed, we responded to our personal experience by forming this organization and making a commitment to change that uncertain future, aiming at nothing less than a cure for A-T.
Brad and Vicki Margus
Our Mission
To encourage and support excellent laboratory research which will accelerate the discovery of a cure or possible therapies for ataxia-telangiectasia by:
- awarding competitive research grants to top scientists using a peer-review board comprised of top scientists and physicians,
- organizing and sponsoring workshops and symposiums in order to encourage cooperation among laboratories and to generate new research strategies, and
- working with Congress and the National Institutes of Health to encourage the funding of active research on A-T by agencies of the U.S. government.
And:
- To improve the accurate and timely diagnosis of A-T patients by increasing public awareness and by educating physicians.
- To develop and maintain an international patient registry of A-T patients with objective, neutral oversight, while leaving ultimate control in the hands of treating physicians, so that up-to-date clinical information about A-T patients can be obtained for researchers and so that when a treatment is developed, all patients can be reached through their physicians.
- To support and oversee a clinical center and information clearinghouse at a top-rated, world-class medical center for the evaluation of A-T patients by a multidisciplinary team of specialists, and for the accumulation of experience in managing the many facets of A-T such as ataxia, cancer, and immune problems.
- To develop quantitative endpoints for objectively measuring the progression rate and severity of the symptoms of A-T.
- To maintain and enlarge a tissue/cell bank with objective, neutral oversight, and control in order to ensure free access of existing and new researchers to A-T patient specimens.
About the A-TCP
Research Strategy
We’re more driven than ever to capitalize on recent discoveries and advance therapies for A-T.
A-T Resources
A listing of all resources for caregivers, researchers, clinicians and fundraisers.