Dear A-T families, friends and supporters,
Wobbly Feet Foundation, Inc. was established in 2009 after learning of our son Connor’s diagnosis, 1 month before his 3rd birthday. The news was devastating; however, we knew we needed to raise as much awareness as we could in order to help those already in the flight continue the needed medical research towards finding a treatment and/or a cure. A-T is a rare genetic condition and therefore is not on the forefront of the medical community. It is through grass roots fundraising and generous corporate sponsorship that we are able to push A-T into the main-stream of medical research and keep it there.
A-T encompasses physical and physiological symptoms of more prevalent diseases, and though you may not know someone with A-T, you may however know someone with Muscular Dystrophy, Muscular Sclerosis, Parkinson’s, Immune Deficiency Syndrome or various kinds of blood cancer, all of which A-T children may experience. With this connection, research currently being done as well as future research may not only unlock key elements towards developing treatments or finding a cure for A-T, it may also open doors to solving mysteries of these other conditions as well.
There are approximately (only) 500 children diagnosed with within the US categorizing A-T an “Orphan Disease” among the medical community. A-T research receives little to no federal nor large pharmaceutical funding. Every dollar raised through grass roots efforts is so desperately needed and appreciated!
Because an A-T child’s movement center is progressively lost, we are their legs; because their speech becomes less clear, we are their voice…join us to help continue the flight for a treatment and a cure.
We thank you for visiting our site and look forward to the day we have a cure for our precious Angels!
President, Wobbly Feet Foundation
About Ataxia Telangiectasia
Ataxia-Telangiectasia (A-T) is a rare, progressive, multi-systematic inherited disorder primarily affecting the nervous system & immune systems. Typically by the age of 5, coordinating movements begin to decline and children develop difficulty walking, balance and hand coordination (Ataxia), involuntary jerking movements (chorea), muscle twitches (myoclonus), and disturbances in nerve function (neuropathy). The movement problems typically cause people to require wheelchair assistance between 8 and 10 years old. People with A-T have slurred speech and trouble moving their eyes to look side-to-side (oculomotor apraxia). Small clusters of enlarged blood vessels called telangiectases, which occur in the eyes and on the surface of the skin, are also characteristic of A-T.
People with ataxia-telangiectasia often have a weakened immune system, and many develop chronic lung infections. They also have an increased risk of developing cancer, particularly cancer of blood-forming cells (Leukemia) and cancer of immune system cells (Lymphoma). Affected individuals are very sensitive to the effects of radiation exposure, including medical x-rays. The life expectancy of people with Ataxia Telangiectasia varies greatly, but affected individuals typically live into early adulthood.
Reference: NIH US National Library of Medicine. 2016.7/05/2016. https://ghr.nlm.nih.gov/condition/ataxia-telangiectasia#
What is A-T? NIH National Library of Medicine (full description)