ABOUT ATAXIA-TELANGIECTASIA

Ataxia-telangiectasia, or A-T, is a rare genetic disease that attacks children, causing progressive loss of muscle control, immune system problems, and a high rate of cancer.

Caring for People with A-T

Find a 16-page handbook covering topics including neurology, managing lung health, immunology, vaccine schedules, cancer, and school recommendations. Since A-T is a rare disease, it can be difficult to find comprehensive information on how to best manage an A-T patient’s health. The A-T Children’s Project has been funding specialized clinical evaluations for A-T since 1995, and much of the information found here is a result of the hundreds of families who have been a part of this effort.

Mission Statement

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.

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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
  • 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 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.

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Message from Our 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 in 1993 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

What Our Donors Say:

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