Quick Information for Press

For more information, please contact Jennifer Thornton, Executive Director



Ataxia-telangiectasia (A-T):

  • Is a rare genetic disease
  • Attacks in early childhood
  • One in 40,000 – 100,000 babies is born with A-T
  • Affects many body systems including the brain, lungs, and immune system. As such, patients may suffer from symptoms like those seen in cerebral palsy, muscular dystrophy, and certain lung disorders. They are also much more likely to develop cancer, particularly immune-related cancers such as leukemia and lymphoma.

Children with A-T:

  • Both boys and girls of all ethnic backgrounds are affected
  • Most children with A-T depend on a wheelchair by age 10
  • About 30 percent of children with A-T develop lethal cancers
  • About 70 percent of children with A-T have weakened immune systems
  • 100 percent of children with A-T experience relentless loss of muscle control due to brain cell death that affects their walking, speech, swallowing, and reading

 Other facts:

  • There is currently no cure for A-T and no way to slow the progression of the disease.
  • Parents of A-T children do not exhibit symptoms of the disease, but (usually unknowingly) carry a mutated gene that causes it. Each time two “A-T carriers” have a child together, there is a 1 in 4 chance that child will have A-T.
  • Similarities between A-T and other major diseases suggest knowing more about A-T could lead to therapies for more common diseases such as cancer, Alzheimer’s, and Parkinson’s.

The A-T Children’s Project

The Ataxia Telangiectasia Children’s Project, also known as the A-T Children’s Project, is a nonprofit organization founded in 1993 by Florida parents with two sons who have ataxia-telangiectasia (A-T), a rare, fatal genetic disease that affects children. 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 biomarkers – to optimize disease management strategies, develop new treatments and find a cure.

Our organization:

  • Encourages and supports laboratory research to accelerate the discovery of a cure or possible therapies for A-T by:
    • Awarding competitive research grants to top scientists using a peer-review board of scientific experts
    • Sponsoring workshops and symposia to encourage cooperation among laboratories and generate new research strategies
    • Working with Congress and the National Institutes of Health to encourage U.S. government funding of active research on A-T
  • Funds a multi-disciplinary, international center at Johns Hopkins Hospital in Baltimore, Maryland to focus solely on the clinical evaluation and treatment of patients with A-T.
  • Improves the accurate and timely diagnosis of A-T patients by increasing public awareness and educating physicians.
  • Maintains an international registry of A-T patients and tissue/cell banks to provide up-to-date clinical information and resources to researchers.
  • Provides emotional encouragement, guidance, and hope to families impacted by A-T through telephone support, an internet forum, and family conferences.