Pay it Forward: Tyler’s Hope for a Dystonia Cure

tylers-hope

InterMed CEO Rick Staab has been adamant that a cure will be discovered for Dystonia ever since his children, Tyler and Samantha, were diagnosed with the neurological movement disorder.

It’s not a hollow conviction, either; dystonia is non-degenerative and entirely curable. Essentially a product of crossed wires in the brain, the disorder can cause painful muscle spasms, cramping, repetitive involuntary movements, and more. Staab has dedicated himself to helping increase the visibility of dystonia, coordinate research around a cure, and raise funds to accelerate the timeline of the work. Each year, Tyler’s Hope for a Dystonia Cure, the foundation through which those efforts have been channeled, continues to drive a little closer to that goal, and in 2016, it has made significant strides.

In the past year, Tyler’s Hope sponsored a $2.5-million alignment grant to coordinate the work of pharmaceutical researcher Nicole Calakos at Duke University, animal researcher Bill Dauer at the University of Michigan, and fMRI studies from David Vaillancourt and Yuqing Li at the Center for Movement Disorder and Neurorestoration at the University of Florida.

“We had to jump through a bunch of hoops to get the universities to share and work together,” Staab said. “They don’t want somebody else to take something or use their knowledge or information to run with it.”

“We said, ‘OK, bar the doors, forget who you’re working for; all we’re trying to do is find a cure. Think about the research that’s going to get us to this cure. Don’t worry about writing papers and NIH grants. We’ll fund the research.’ ”

hope-weekend

For past year, the scientists held frequent meetings, shared their animal models, and coordinated other gains that “never happened before,” Staab said, especially given the physical distance that separates each of them. Together, the group comprises a discrete research laboratory that is dedicated to curing dystonia, with each arm complementing the work of the others. Thanks to Dauer’s work, the group has an animal model from which research can be used to derive boundaries for clinical trials. Calakos’ studies are helping advance a pharmaceutical solution, and Vallaincourt and Li’s work is helping refine the location of dystonia in the human brain. Almost eight years ago, the foundation backed dystonia researcher Rose Goodchild, who, within the past year, has made a breakthrough in connecting torsin, a protein found in dystonia patients, with the symptoms it produces at a cellular level. Staab is hopeful that her research can be paired with that of scientists at U.S. universities who have been working on the same thing, and Tyler’s Hope will continue to raise funds to help support their efforts.

“These are brilliant people, neurosurgeons, neurologists, who are saying it’s [only] a matter of time and money,” he said. “All our money goes to finding this cure and nothing else, really. Events like the Hope Weekend, that’s how we do it.”

The Hope Weekend started years ago as a golf tournament and fundraiser, but has evolved into a weekend-long celebration that Staab said is more inclusive to non-golfers. Held annually in August, the opening event of the weekend is a VIP house party in Gainesville, Florida, on Thursday evening; Friday night, the action moved to the University of Florida Hilton ballroom for a talk by leading dystonia researchers on their work and its progress. Then, the weekend concluded with the Saturday golf outing. Expanding its scope to Thursday and Friday has allowed Tyler’s Hope to add another 100 seats at the banquet, Staab said.

“It’s really laid back, and people are there to celebrate doing a good thing and funding the research,” he said.

Future events will do more to raise dystonia awareness through various channels. A think-tank summit at the University of Florida recently coordinated research from top dystonia scientists, and an oyster roast at Blackbeard’s Cove in Charleston, South Carolina, will bring families together for a cookout and miniature golf. The group is also planning a 5K race for December.

Beyond special events, Tyler’s Hope also works to expand awareness of dystonia in the general population, efforts that Staab said have been successful at least in the area around Gainesville, where Tyler’s Hope car decals are familiar and local media has embraced coverage of the cause over the years. The group posts regular social media updates on dystonia for Tyler’s Hope Tuesdays. Staab also points to the patient load at Vallaincourt’s and Li’s Center for Movement Disorder as shifting to a 3:1 ratio from a 15:1 ratio of Parkinson’s to dystonia patients as evidence that awareness is growing.

“I think a lot of people come there because they hear about the movement disorder center, and it’s increased the population,” Staab said. “For the last 10 years or so, every expert I’ve spoken to says 500,000 [Americans live with dystonia]. We’ve constantly talked with people who didn’t know they have dystonia, and now they’re being diagnosed because they saw a doc who put it there with genetic testing, or now they’re seeing the right person.”

“From the human side of it, until we find a cure, the awareness creates compassion and people who can connect that know what they’re going through in treatment,” he said.

Staab’s own children are growing, too. Tyler, 18, started college this fall, and is taking a light courseload to ease his transition to campus life; 15-year-old Samantha is getting good marks in high school, and takes many advanced courses. The youngest child, 11-year-old Luke, is symptom-free for dystonia, and is shaping into a diehard lacrosse player. Deep brain stimulation therapy, which involves placing electrodes within the children’s brains to regulate the signals transmitted to their muscles, is still the primary means of relief for both Samantha and Tyler, who will require a battery replacement surgery soon. As the work of Tyler’s Hope continues, Staab remains confident that larger gains are just around the corner.

“With still relatively little funding in a short amount of time, we found the gene and the protein that cause these symptoms, and now we’ve focused that protein even further into what part of the things that it controls causes the symptoms,” he said.

“We don’t know when, we just know [dystonia] is curable,” Staab said. “The more money we can put to research, the faster that timeline happens. Hopefully it’s going to be in my lifetime. That’s my goal.”   

For more information, visit TylersHope.org.