A group of people giving the thumbs up

ECHO Welcomes New Sponsor: A-T Children’s Project

by | May 22, 2015

A-T Children's Project Logo

Every Citizen Has Opportunities, Inc. Is thrilled to welcome our newest ECHO Tennis Classic sponsor, the A-T Children’s Project, through a generous donation of the Lewin Family.  With this donation, the Lewins were able to connect the two organizations that help people with special needs – the A-T Children’s Project in their efforts to find life-improving therapies and a cure for ataxia-telangiectasia (or A-T), and ECHO whose focus is to assist adults with developmental and intellectual disabilities.  The Lewins son has A-T, and participates with ECHO’s Medically Fragile Program.

Here is what we learned about A-T Children’s Project:

A-T CHILDRENS PROJECT

Established in the United States in 1993, the A-T Children’s Project is a 501c3 nonprofit organization that raises funds to support and coordinate biomedical research projects, scientific conferences and a clinical center aimed at finding life-improving therapies and a cure for ataxia-telangiectasia (A-T).

A-T is a rare, genetic disease that attacks children, causing progressive loss of muscle control, cancer, and immune system problems.

  • Facts about Ataxia-telangiectasia (A-T):
  • It 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.
  • 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.
  • There is currently no cure for A-T and no way to slow the progression of the disease.
  • 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.

A-T Children’s Project Mission

The funds raised by the project are used to:

  • Encourage and support laboratory research to accelerate the discovery of a cure or possible therapies for A-T.
  • Award competitive research grants to top scientists using a peer-review board of scientific experts.
  • Sponsor workshops and symposia to encourage cooperation among laboratories and generate new research strategies.
  • Work with Congress and the National Institutes of Health to encourage U.S. government funding of active research on A-T
  • Fund a multi-disciplinary, international center at Johns Hopkins Hospital in Baltimore, Maryland and support a Cancer Center at St. Jude Children’s Medical Center in Memphis, Tennessee to focus solely on the clinical evaluation and treatment of patients with A-T.
  • Improve the accurate and timely diagnosis of A-T patients by increasing public awareness and educating physicians.
  • Maintain an international registry of A-T patients and tissue/cell banks to provide up-to-date clinical information and resources to researchers.
  • Provide emotional encouragement, guidance and hope to families impacted by A-T through telephone support, an internet forum and family conferences.

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.

 

 

Archives