Meet our Mom on a Mission this week, Samantha Dzembo!
Wobbly Feet Foundation was established by Nick and Samantha Dzembo in 2009 after their son, Connor (now 9 yrs. old), was diagnosed with Ataxia Telangiectasia, a rare genetic and progressive neuro-degenerative Orphan Disease affecting approximately 500 children worldwide. As an Orphan Disease, A-T receives little to no federal or large pharmaceutical funding. There is neither currently a formal treatment nor a cure available, often limiting the life expectancy of a child with A-T to the early 20’s. WFF raises funds to financially aid A-T children with life improving and/or prolonging medical needs not covered by insurance, as well as, fund scientific research needed to discover a formal treatment and/or cure.
2015 was a great success with Wobbly Feet having our best year yet raising over $70,000!! 100% which is already been put to work! Our largest contribution was a $30,000 donation to the A-T Children's Project (www.atcp.org), our national foundation for A-T research. These funds were earmarked as contribution for a nation-wide research study to sequence the individual genome of all 500 children known to be diagnosed with A-T in the United States. The results of this study will give insight into any genetic variations that compensate for mutations in the A-T gene, possibility leading toward a drug treatment able to reduce the most devastating effect of A-T, the progressive neuro-degeneration. A-T kids, including Connor, have already been sequenced and results are now being compiled. This study brings us new hope!
Additionally, with all funds raised, we continued our funding of on-going research projects and have provided grants to families of a child diagnosed with A-T to assist in payment of un-insured medical expenses aimed at improving their quality of life. Such grants include a chair lift to help a boy with A-T transfer from the 1st to the 2nd floor of his family home where his bedroom is, helping a family redesign their home pool with accessibility for their 2 wheel-chair bound sons so they may begin at-home water therapy and for a single mom whose young daughter with A-T. & seizures could pay down the co-pays of the extensive medical bills pilling-up due to numerous hospital stays.
For more information on Wobbly Feet, our upcoming event and continued research, please visit www.WobblyFeet.org
Email: Info@WobblyFeet.org
Website: www.WobblyFeet.org
Facebook: www.facebook.com/wobblyfeet
Facts:
* There are only 500 children in the USA diagnosed with A-T; approx. 600 worldwide.
* 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.
* Wobbly Feet Foundation has raised over $200,000 since 2009 and funded 6 research projects.
