LEAVING A LEGACY

W. Dan Wright would like to see the United Mitochondrial Disease Foundation out of business.

“I would like to see a world where we have a cure for mitochondrial disease, where nobody needs support and one where we all go about worrying about something else,” he said.

Dan, former CEO of Wright Brand Foods, served on UMDF’s Board of Trustees for 12 years in many capacities, including chairman, and currently serves on UMDF’s Honorary Board of Trustees. He is a self-taught student of mitochondrial medicine and a philanthropist who is keenly interested in funding research leading to treatments and potential cures for mitochondrial disease. He also believes that UMDF will be at the forefront of those discoveries, which is why he continues to be a major donor to the organization. Dan and his wife, Pat, became involved with UMDF because they believe the research they fund may help patients now and in the future.

Dan and Pat’s journey began nearly 37 years ago. Their daughter, Kelsey, was three years old and began having symptoms of mitochondrial disease. At the time, they did not know what was causing these symptoms with their daughter. It would be a ten year long diagnostic journey before they would learn about the mitochondrial DNA mutation that impacted Kelsey. After the diagnosis, they sought out medical experts and anybody they could speak with about Kelsey’s condition. Getting answers to questions was next to impossible.

“We did not know what mitochondrial disease was. I’m a business guy and didn’t really have a science background. We needed a place where we could talk with other families,” Dan recalled. That is when they found the UMDF. “I can’t stress how important that was,” he said.

For Kelsey, who was 13 at the time of diagnoses, involvement with the UMDF proved to be somewhat therapeutic. She was so excited to be able to help raise money for mitochondrial disease research. Despite having a devastating form of mitochondrial disease, Kelsey graduated from Midwestern State University Summa Cum Laude with a Bachelor’s Degree in Business Administration.

Kelsey loved to raise awareness for mitochondria disease and sent out countless UMDF ‘Energy Bands’ in an effort to do so. When she wasn’t rooting for her beloved Atlanta Braves, she enjoyed being with her family, skiing and swimming.

Kelsey lost her battle with mitochondrial disease in April 2015. She was 34.

“When you have one of your own children pass, it’s a difficult situation that you can’t prepare yourself for,” Dan said. Kelsey’s passion to raise awareness and funding for research is something the Wrights continue to move forward.

“Kelsey wouldn’t want us to stop what we are doing. We want to see help for the future,” Dan stated. “We stand on the shoulders of the people that went before us.”

Over the years, Dan has seen significant advances in the area of mitochondrial medicine. He remembers his first symposium as a gathering of a few clinicians and researchers. Today, he says, the annual gathering attracts hundreds of clinicians and researchers cutting across many different disciplines. Just a decade ago, a diagnosis was obtained through a muscle biopsy. Today, we have gene sequencing and more precise testing. The advances give him hope that therapeutics and cures are not too far off in the future and is why he continues to fund critical research. While research and drug development is costly, Dan believes patients must also participate.

“When these clinical trials come up, it’s imperative that as many people as possible participate in them with the understanding it may not help you, but it will help the next generation,” he added.

Dan wishes for a future that will produce a pill, much like an aspirin, that a patient with mitochondrial disease can take to eliminate symptoms. Until that day comes, his family continues to financially impact research and support through the UMDF. He says it inspires him because every dollar that is raised or given has an impact.

“Every time we see a new family at symposium or at a UMDF event, we know that they are going to have the information and support that we didn’t; and every time I see a new researcher entering the field, I am encouraged. It takes a whole crew rowing the boat to get anywhere,” he added.

Kelsey’s team for the Dallas area Energy for Life Walk was named Kelsey’s Krew. Dan said he will continue to be among the rowers, pushing harder if needed, to bring about an end to mitochondrial disease.