If you are interested in Volunteering for one of our upcoming events please email Chris at to receive a volunteer form.
We are always looking for ways to spread the word about Batten Disease and the need for a Cure. We were lucky to get a diagnosis in 18 months. It typically takes 4 to 7 years. If you would like to help get the word out please contact Chris Scarpetta at 815-977-0082 or by email
Since Brocks diagnosis in 2015, there has been research and clinical trials done for gene therapy. Known to stop the progression of the disease. Also enzyme replacement treatments , are known to slow or halt the progression of symptoms . For more information, please visit the websites below.