Resources- Specific Diagnosis Card Catalog- Ataxia Telangiectasia
See Also: Ataxia
Who to Contact
Ataxia-Telangiectasia Children's Project
668 S. Military Trail
Deerfield Beach, FL 33442
(954) 481-6611
(800) 5-HELP-AT (se habla espaņol)
Fax: (954)725-1153
E-mail: info@atcp.org
Web: www.atcp.org
This non-profit 501(C)(3) 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.
A-T Project
3002 Enfield Road
Austin, TX 78703-3605
(512) 472-3417
E-mail: A-TProject@austin.rr.com
Web: www.atproject.org/
This organization supports research that will contribute to a model of disease management for A-T, along the lines of those developed for diabetes, cystic fibrosis, PKU, epilepsy, and others. Specifically, The A-T Project supports research towards finding treatments that will prevent, stop or reverse the relentless progression of ataxia-telangiectasia.
The areas of treatment research include nutritional therapies, dietary management, use of cytokines, as well as more conventional drug treatments. It provides parent education, travel funds, equipment and supplies for families to the NIH-funded A-T Clinical Research Center Study at Children's Hospital of Philadelphia (CHOP). It hosts an annual Metabolic Roundtable on A-T; funds the Food Alcohol Project at the University of Texas and the exploratory studies on the A-T mice, alcohol, and inositol; has started an A-T mouse colony at MD Anderson Cancer Center; pays airfares for researchers to attend important research meetings; and funds additional research at CHOP to try to determine exactly where in the A-T cell the myoinositol deficiency lies. The A-T project has also initiated additional research which has been paid for by existing grants to look at abnormalities in the membranes of A-T cells, metabolic studies of A-T patients (at no cost to families) determining individual abnormal metabolic requirements as well as analyzing group findings; signal transduction work on A-T at M.D. Anderson Cancer Center and more. It also fields many calls from parents, therapists, educators, etc. and sends out educational materials.
Ataxia Telangiectasia Research Foundation
5241 Round Meadow Road
Hidden Hills, CA 91302
(818) 704-8146
Fax: (818) 704-8310
Web: www.gspartners.com/at/
This private, non-profit organization was founded in 1984 by Pam and George Smith, whose daughter Rebecca has A-T. The sole purpose of this foundation is to fund medical research that may lead to a cure for ataxia-telangiectasia.
Where to go to Chat with Others?
Ataxia Telangiectasia
This support group is open to anyone interested in making friends, sharing information and support with others affected by 'Ataxia Telangiectasia.'
ATFAMILY-L Mailing List
The A-T Children's Project established a LISTSERV mailing list through the NIH to act as an online meeting place for A-T families.
Learn More About It
Ataxia Telangiectasia
From the National Institute of Neurological Disorders and Stroke
GeneReviews: Ataxia-Telangiectasia
Ataxia Telangiectasia
From Online Mendelian Inheritance in Man (OMIM)
Ataxia Telangiectasia: Questions and Answers
From the National Cancer Institute and the National Institutes of Health
Links
The National Organization to Treat A-T
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