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Press Kit

For more information, please contact Jennifer Thornton, Executive Director at jennifer@atcp.org.

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.

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, A-T patients may suffer from symptoms like those seen in cerebral palsy, muscular dystrophy, and certain lung disorders. People with A- T 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 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.

Ataxia Telangiectasia Children's Project

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.