Sarah Ernstberger

9470 Forturne Dr.

Fishers, IN 46037

Community Friend,

I am writing to you today to ask for your support for a special cause that is deeply personal to me—inside-my-deep brain. 

The 8th Dystonia Zoo Day Walk is an exciting annual event set to take place on September 14, 2024 to help find a cure for dystonia.  This special event will benefit the work of the Dystonia Medical Research Foundation (DMRF). 

Dystonia is a brain disorder, much like Parkinson’s, that causes muscles in the body to contract and spasm involuntarily.  Physical symptoms may impede the ability to walk, sit upright, speak, or even see.  There are multiple forms of dystonia and the disorder affects children and adults of all ages and backgrounds. 

This walk will bring together the local patient and professional community and the public to raise awareness of dystonia and funds to benefit the work of the DMRF.

There are two women working hard to put on this event to spread awareness for this disorder that people know very little about.  Each of us has a different story because every person with dystonia is different enough to make it hard to diagnose correctly. 

·               Sunshine's 13-year-old son, Aidan, lived with a misdiagnosis for 3 years.  They had a hard time finding pediatric doctors in the state of Indiana who understood Dystonia.  They had to take Aidan to a specialist in Cincinnati for treatment.  We are working to bring awareness to this disorder in Indiana for families such as ours who has to travel out of state to get proper treatment for their children. 

·               I have had Dystonia since I was 7 years old.  It took me 4 years to be correctly diagnosed.  Oddly enough, it was one of my mother's high school students who diagnosed me and then told her which doctor to go see.  There is currently no treatment that helps me, so I am waiting for the next medical breakthrough to help me.

We are looking for auction items. Please feel free to contact me with any questions. You can find out more about dystonia online at www.dystonia-foundation.org.

Sincerely,

Sarah Ernstberger

sarahernstberger@yahoo.com