About Us

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 fight 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 help spread awareness and contribute to important medical research in hope of better understanding this complex disease and development of a formal treatment and/or cure.

 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 less than 1,000 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 fight 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!

Nick & Samantha Dzembo – Founders, Wobbly Feet Foundation

Board of Directors

Samantha Dzembo – President/Co-Founder

Nick Dzembo – Ex. Director/Co-Founder, Financial Advisor/Treasure

Michael Hankin Esq – Legal Council

Kim Stitik-Fitzgerald, ARNP – Medical Advisor

Diane Lacenere – Corporate Engagement Co-Chair

Mike Lacenere – Corporate Engagement Co-Chair

Kathy Castellano – Fundraising Chair

What is Ataxia Telangiectasia (A-T)?

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.

A-T Quick Facts:

  • There are only approximately 600 children in the USA diagnosed with A-T
  • A-T is neuro-degenerative and progressive, similar to ALS
  • A-T encompasses symptoms of Muscular Sclerosis, Muscular Dystrophy, Parkinson’s and immune deficiency
  • Children with A-T are 1000% more at risk for blood cancer than their peers and suffer from chronic respiratory illnesses due to their low immunity
  • A-T is radio-sensitive making cancer extremely difficult to treat
  • A-T is considered an Orphan Disease and receives little to no Federal or large pharmaceutical funding for research
  • A-T children typically need assistance of a wheelchair by 8-10 years old
  • The life expectancy of a child with A-T is late teens to mid-20’s
  • There is current no formal treatment and no cure

Reference: NIH US National Library of Medicine. 2016.7/05/2016. https://ghr.nlm.nih.gov/condition/ataxia-telangiectasia#