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The A-T Children's Project
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 when two
of their children were diagnosed with A-T. It is a public, tax-exempt,
non-profit organization pursuant to Section 501(c)(3) of the Internal
Revenue Code.
All gifts and donations to the A-T Children's
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 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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What is A-T?
A Multi-system Disease...
Ataxia-telangiectasia, or "A-T,"
is a progressive, degenerative disease that affects a startling
variety of body systems. Children with A-T appear normal at birth,
and the first signs of the disease usually appear during the second
year of life. These first signs are usually a "wobbly"
lack of balance and slurred speech caused by "ataxia,"
which means a lack of muscle control.
Ataxia...
The onset of this ataxia marks the beginning
of progressive degeneration of a part of the brain, known as the
cerebellum, that gradually leads to a general lack of muscle control,
and eventually confines the patient to a wheelchair. Because of
the worsening ataxia, children with A-T lose their ability to write,
and speech also becomes slowed and slurred. Even reading eventually
becomes impossible as eye movements become difficult to control.
Telangiectasia...
Soon after the onset of the ataxia, the A-T
patient usually shows another clinical hallmark of A-T: "telangiectasia,"
or tiny red "spider" veins which appear in the corners
of the eyes or on the surface of the ears and cheeks exposed to
sunlight. Although these surface telangiectasia are harmless, their
unique appearance together with ataxia is what led to naming this
disease "ataxia-telangiectasia".
Immune System Problems...
For most (about 70 percent) of children with
A-T there is another clinical hallmark: immunodeficiency that usually
brings recurrent respiratory infections. In many patients, these
infections can become life threatening. Because of deficient levels
of IgA and IgE immunoglobulins, the natural infection fighting agents
in the blood, children with A-T are highly susceptible to lung infections
that do not respond to typical antibiotic treatments. For these
A-T patients, the combination of a weakened immune system and the
progressive ataxia can ultimately lead to pneumonia as a common
cause of death.
Predisposition to Cancer...
Children with A-T tend to develop malignancies
of the blood system almost 1,000 times more frequently than the
general population. Lymphoma and leukemia are particularly common
types of cancer, although the frequencies of most cancers are elevated.
Ironically, another facet of the disease is an extreme sensitivity
to radiation, which means that A-T patients cannot tolerate the
therapeutic radiation usually given to cancer patients.
Other Features of A-T...
Other features of ataxia-telangiectasia that
may affect some children are: mild diabetes mellitus, premature
graying of the hair, difficulty swallowing causing choking and/or
drooling and slowed growth. Even though A-T is a multi-system disorder,
the children afflicted have and maintain normal or even above-normal
intelligence. Their dispositions seem to remain equable and help
them to maintain a healthy outlook on life despite the progression
of their disabilities.
How Frequent is A-T?
Ataxia-telangiectasia respects no racial,
economic, geographic or education barriers. Both males and females
are equally affected. Epidemiologists estimate the frequency of
A-T as 1 in 40,000 births. But it is believed that many children
with A-T, particularly those who die at a young age, are never properly
diagnosed. Therefore, this disease may actually be much more common.
The Prognosis...
A-T is presently incurable and unrelenting.
If they are lucky enough not to develop cancer, most A-T children
are dependent on wheelchairs by the age of ten, not because their
muscles are too weak, but because they cannot control them. Later,
A-T patients usually die from respiratory failure or cancer by their
teens or early twenties. A few A-T patients live into their forties,
but they are extremely rare.
What treatments are available?
There is no cure for A-T, and there is currently
no way to slow the progression of the disease. At this time, treatments
are directed only toward partially alleviating some symptoms as
they appear. Because A-T is a rare, "orphan" disease,
very little research data is available on pharmaceutical therapies
that may aid these children. Physical, occupational and speech therapy
are used to help maintain flexibility, gamma-globulin injections
help supplement the immune systems of A-T patients, and high-dose
vitamin regimes are being undertaken with some moderate results.
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Contact The A-T Children's
Project
A-T Children's
Project
668 S. Military Trail
Deerfield Beach, Florida 33442-3023
Phone: 954-481-6611
Fax: 954-725-1153
Toll-Free: 800-5-HELP-A-T
info@atcp.org
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• Brad Margus
- President
• Jennifer Thornton - Executive Director
• Cynthia J. Rothblum-Oviatt, Ph.D. - Science Coordinator
• Rosa Fernández - Program Coordinator
• Aletia Patterson - Fundraising Coordinator |
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How Ham's is Helping
The Ham’s & Hogs Charity Ride for A-T
was held this past June. During this event,
60 plus riders traveled from Greenville, NC to Kinston NC, then
to Goldsboro, NC and back to Greenville NC,to raise money for A-T.
Participants won door prices and were treated to food and beverages
at the Ham’s of Greenville.
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A Call To Action
Ham's is a proud supporter of this worthy cause.
But they need more help. Every dollar raised
helps to bring the children closer to a cure. Every contribution
made supports important scientific and medical research to beat
a killer. Every person who participates in a fundraiser like Ham's
and Hog's demonstrates the kind of caring we need to keep moving
forward. Will you help? You can make a difference! Get involved
in this fight today.
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Help Us Help Them
Please click on any of the icons
below for more information or to find the way of helping that suits
you best.
Do it today.
Support A-T kids, their families,
and the race to find a cure.
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