Ataxia-Telangiectasia (A-T) is a progressive, degenerative disease of the nervous system. It can only be inherited if both parents carry a single defective A-T gene and their child receives a copy of the defective gene from each parent.

    The first signs of A-T usually show up after they are a year old. Poor coordination (loss of balance and unstable walking, they often hold their head leaning to one side). The tend to be quiet and don't talk a lot. They may also tend to drool and lack coordination in swallowing and breathing.

    Another sign is tiny red "spider" veins that appear in the corners of their eyes and /or on the surface of their ears and nose. These signs might be present when they are toddlers but may not occur until they are older.

    Due to their lack of motor coordination their speech tends to be slurred and it takes them time to get their words out. This sometimes gives the false impression that they are mentally impaired. These children are usually above average in intelligence and do well; they just need patience and understanding.

    A-T has no racial or geographic barrier. Both males and females are equally affected.

    A-T is at present incurable. Most A-T children become dependent on wheelchairs by the age of ten (they are muscularly strong but have no balance and tire easily). Their life expectancy is shortened. Many succumb to respiratory failure and cancer by their teens and early twenties.

    Due to the dedication of the A-T organizations, the research funded has been successful in finding the A-T gene. However, there is still years of work ahead and time is running out for many children like John. There is no treatment. And the clock is ticking...

    If you would like to read more on A-T or the fight against it, the following organizations can help: Q&A About Ataxia - Telangiectasia, The A-T Project, or The A-T Children's Project (Discussed further below). Choosing either of these should open up a new window. When you are done reading, simply close the window and you'll be back here.

    There are also 4 organizations that you may call or write for information about A-T. The first is The A-T Medical Research Foundation (A-TMRF) founded in 1984 by Pam and George Smith whose daughter Rebecca has A-T. This is a non-profit organization whose sole purpose is to fund medical research and find a cure for ataxia-telangiectasia. You can reach their foundation by writing or calling:

      The A-T Medical Research Foundation
      5241 Round Meadow Rd.
      Hidden Hills, CA 91302
      (818) 704-8146 or (818) 704-8310 (fax)

The A-T Project founded by Robert and Mary Howard whose son Patrick has A-T. This is a non-profit organization dedicated to funding research in finding treatment and ultimately a cure for A-T. The A-T Project is funding researchers committed to learning about A-T as a comprehensive disorder and who have a focus toward clinical application. The A-T Project is working with Gerald Berry, M.D. (Children's Hospital of Philadelphia) on double-blind study looking at the effects of inositol in Children with A-T. For more information on the A-T Project write, call, e-mail to, or visit the website of:

      The A-T Project
      3002 Enfield Rd.
      Austin, TX 78703
      (512) 472-3417 or (512) 323-5161 (fax)
      mhoward@mail.utexas.edu
      www.atproject.org

The A-T Children's Project founded by Brad and Vicki Margus whose sons Jarrett and Quinn have A-T is the newest of the non-profit organizations. This organization has gotten nationwide attention due to the tireless efforts of Brad and Vicki. They have had articles written in magazines (e.g. People). They have had their story told on Turning Point with Barbara Walters, Larry King Live, etc. The A-T Children's Project has been instrumental in starting the A-T Clinic at John Hopkins in Maryland. Brad and Vicki have gotten the attention of legislators, the medical field educating everyone about A-T and the need for funding to find a cure for this devastating disease. You can contact the A-T Children's Project by writing, calling or visiting their website:

        The A-T Children's Project
        398 West Camino Gardens Blvd., Suite 104
        Boca Raton, FL 33432
        (407) 395-2621
        www.med.jhu.edu/ataxia/

Lastly, there is the AT Alliance, which can be reached by writing or emailing them at:

        AT Alliance
        P.O. Box 1643
        Madison, TN 37116
        atalliance@aol.com