Even a small donation will go a long way to helping us meet our goal for the INADcure Foundation!
Hi Friends & Family!
This is a cause that is very important to us because our son, Robb, had atypical INAD. He passed in 1998 at age 10. Until now, there has not been a unified voice, or a centralized effort, to raise funds 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 the INAD community.
For those unfamiliar with INAD, Infantile Neuroaxonal Dystrophy is an extremely rare, inherited degenerative disorder of the nervous system. The symptoms 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. Many affected children never learn to walk or talk or lose this ability shortly after learning it. During the later stages of the disease, severe muscle tightness, progressive cognitive decline and problems with vision and breathing have a large impact on daily life. Unfortunately, many children with INAD do not live beyond age 10.
Currently, there is no cure for INAD. And being that it is very rare, there is little funding for research. But that shouldn't mean that the families impacted can't have hope. It just means that we all have to come together to help. When the INADcure Foundation was formed, we were excited to help.
Check out our fundraising page and please consider making a donation to help us reach our goal. There are more and more children diagnosed with this terrible disease all the time because it can now be tested for. Your support will truly make a difference in the lives of all the families impacted by INAD.