The Ataxia Telangiectasia Children's Project, better known as the A-T Children's Project, was founded in late 1993 by a family in Florida with two sons who have A-T. It is a public, tax-exempt, non-profit organization pursuant to Section 501(c)(3) of the Internal Revenue Code, and all gifts and donations to the Project are tax deductible. The A-T Children's Project was formed to raise funds through events and contributions from corporations, foundations and friends. These funds are then used to accelerate first-rate, international scientific research aimed at finding a cure and improving the lives of all children with ataxia-telangiectasia.
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.
- 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 the 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.