Help combat Batten at 5K run/walk in Ann Arbor

November 5, 2018  //  FOUND IN: Updates & Resources

Batten disease is a rare and fatal genetic disorder that affects otherwise healthy children. The symptoms include blindness, seizures, cognitive decline and mobility issues.

Currently, the disease is considered terminal by the late teens or early 20s because there is no treatment or cure. But the Klein family has joined with the Beyond Batten Disease Foundation to try and change that — and Michigan Medicine community members can help out!

The family is helping to organize a 5K walk/run on Sunday, Nov. 11. The event will take place at Gallup Park in Ann Arbor beginning at 10 a.m.

It is being run to benefit Bind Up Batten within the Beyond Batten Disease Foundation.

Bind Up Batten was created when the Klein’s son, Charles, was diagnosed with Batten disease after he began to have vision problems in preschool. Unfortunately, his vision continued to worsen, leading to a series of genetic tests, which revealed his diagnosis.

Today, Charles is eight and has begun to exhibit additional symptoms.

“Our family has been through a tremendous amount of pain and struggles, but the one constant throughout the years has been the support of those at Michigan Medicine,” said Jo Klein, Charles’ mother. “Now we want to give back to help raise funds for those who treat patients with Batten.”

For more information about the 5K, including how to register, click here.