"In memory of Grace. Thanks for letting us be a part of your journey. 2020 Senior Topper Volleyball Players Kayli Rylee Chloe Emily "
Just a small donation will go a long way to helping me meet my goal for the INADcure Foundation!
Hi Friends & Family!
I have decided to fundraise for the INADcure Foundation. This is a cause that is very important to me. And until now, there has not been a unified voice, or a centralized effort, to raise funds necessary for scientific research into finding better treatments and ultimately a cure for this devastating disease. Thanks to the efforts of a some determined and caring individuals, the INADcure Foundation has been formed and is the only U.S. based nonprofit dedicated exclusively to INAD community.
For those of you unfamiliar with INAD, Infantile Neuroaxonal Dystrophy is an extremely rare, inherited degenerative disorder of the nervous system. The symptoms of INAD usually start to appear between the ages of 6 months and 2 years. A common pattern in young children is loss of previously acquired skills, mental and physical ability and progression of the disease over time. The progression of INAD is usually rapid after the initial onset of symptoms. Many affected children never learn to walk or lose this ability shortly after learning it. During the last stages of the disease, severe tight or stiff muscles, progressive cognitive decline and problems with vision have a large impact on daily life. Unfortunately, many children with INAD do not live beyond age 10, but some do survive into their teens or later ages.
Currently, there is no cure for INAD. And being that INAD is a very rare disease, there is little funding for research. But that shouldn't mean that the families impacted by INAD can't have hope. It just means that we all have to come together to help.
When I saw that the INADcure Foundation was formed, and needed help, I knew that this was something that I could easily do.
Check out my fundraising page and please consider making a donation to help me reach my goal. Your support will truly make a difference in the lives of the families impacted by INAD.