Each year, some 28,000 people in the St. Louis area are diagnosed with a neurological disorder—and for most of these degenerative diseases, there is no cure. “You can’t talk to a person who hasn’t been touched by one of these diseases,” says Hope Happens executive director Robert Kindle, whose father died of amyotrophic lateral sclerosis (ALS). “The diagnosis of ALS is a death sentence. There is no cure and there is no treatment.” The vision of Hope Happens for Neurological Disorders is to change that dire truth by funding research and promoting collaboration in the study of all neurological disorders at the Hope Center for Neurological Disorders at Washington University.
The nonprofit was founded by Chris Hobler, who lost his battle with ALS in 2005, at the age of 39. “The idea is that research can be fast-tracked by looking at what these degenerative diseases have in common,” Kindle explains. In the past, researchers studying ALS, Parkinson’s Disease, Alzheimer’s and a host of other disorders would only focus on one disease, he says. Since the collaboration between Hope Happens and Washington University to create the Hope Center, there has been a place for researchers to work together and share their findings. “Our vision is to really change the way research for neurological disorders is done, and it’s being done here in St. Louis by this prestigious university, and through the partnerships we have. We hope it can serve as a role model for research in the future.”
Apart from a collaboration of ideas, the Hope Center combines resources for researchers in related fields, Kindle says. “These labs are fairly limited on funds,” he notes. “Putting them together as a collaboration, they can share lab space and equipment.” A specialized microscope, for example, can cost upward of $60,000, which is a sum many labs could not afford on their own. Additionally, the shared quarters further promote shared information.
Much of the money raised by Hope Happens ultimately funds pilot projects undertaken by researchers at the Hope Center, Kindle says. Researchers submit proposals, and those who are accepted earn a two-year grant to proceed with their work. “It helps to get new projects off the ground,” he notes. “To find subsequent funding, you already need to show a lot of data. You need some time to work on the projects to get this together.” Although it takes many years to see major advances in treatment, there have been baby steps forward, Kindle adds. For example, support from Hope Happens has enabled Dr. Timothy Miller to launch Phase 1 clinical trials for a new ALS treatment. His work is on an antisense drug that would treat an aggressive, inherited form of ALS. Other work at the Hope Center by Dr. David Brody involves working with U.S. military physicians in the Landstuhl Regional Center in Germany to treat injured military personnel. The goal is to make more accurate diagnoses of traumatic brain injuries, improve triage decisions and eventually to provide new therapeutics.
The seventh annual Evening of Hope, the nonprofit’s largest fundraiser, was a huge success and featured a performance by the Grammy-nominated Eroica Trio. “Everybody is in some way affected by these diseases, either through a friend or family member or by being a patient,” Kindle says. “Everyone is just one step away from personal experience with these diseases, and that’s why it’s so important.” LN