Some runners run for their health. Others run for the competition.
On Sunday morning, North Carolina native Laura King Edwards will run the Missoula Half-Marathon to bring awareness to rare diseases.
Montana is the 18th stop on her campaign to run in all 50 states in honor of her little sister, Taylor King.
Eleven years ago, 7-year-old Taylor was diagnosed with infantile Batten disease, a degenerative genetic disorder that affects otherwise healthy young children. Taylor began showing signs of the disease when she started having problems in school. Then her vision began deteriorating. By the fifth grade, Taylor was blind.
But that didn’t stop her. That same year, Taylor ran two 5K races with the help of a guide. Laura was so inspired by her sister, she started racing monthly the following year. But she and her family wanted to do more.
“We made a pact with each other that we weren’t going to accept ‘no cure’ for an answer,” Laura said. “We’re not just going to sit back and let this happen. We’re going to fight it.”
In 2007, Laura and her family created Taylor’s Tale, a charity that raises awareness and advocates for legislation and research funding to help increase treatment options and resources for those suffering from rare diseases. One in ten Americans suffers from a rare disease; Taylor’s Tale works to advocate on their behalf.
Laura’s mother and Taylor’s Tale president Sharon King proposed legislation that created the North Carolina Advisory Council on Rare Diseases. The law passed in 2015 and was renamed Taylor’s Law the following year.
Laura said Abeona Therapeutics Inc. is expected to begin a gene therapy trial within the next year. It has the potential to treat rare and degenerative genetic disorders like infantile Batten disease. Taylor’s Tale raised money to help support the trial.
Laura said her hope began to waver about five years ago, as she was planning to run a half-marathon blindfolded with the help of a guide. Completing the race in under two hours without falling gave her a new outlook on the fight.
“It opened up a whole new perspective and world for me to understand that you can still believe, even if ‘believe’ doesn’t mean what you thought it meant in the beginning,” Laura said. “I can still have hope for tomorrow even knowing deep down that my sister is going to die.”
Infantile Batten’s disease is a genetic and fatal form of Batten’s.
Laura carries one gene for the disease, but Taylor carried two. After the ability to see is lost, those with the disease lose the ability to walk, talk and swallow. Now 18 years old, there are no treatment options for Taylor. Laura said her sister’s perseverance inspires her to keep fighting, however she can.
“[Taylor’s] courage in the face of this disease is what continues to push me every day,” Laura said. “I know that I had just as good of a chance of getting sick, and I didn’t. I’d be crazy not to use that as an opportunity to tell the story.”
Laura said she sees the fight against rare diseases much like the fight against breast cancer: People can still die from breast cancer, but with advocacy and research, breast cancer is no longer a death sentence. However, there is much work still to be done and much research that still needs funding.
“I’ve seen the incredible work happening,” Laura said. “I know that we are going to fix this disease.”
Laura’s husband John Edwards helps with behind-the-scenes work and supports his wife on her runs. John said he doesn’t care for running, but his sister-in-law’s story inspires him to try.
“Taylor never complained and had more reason than ever whenever she was running or even just walking around the house,” John said. “I always think about that when my legs start hurting and I just say, ‘Get over it. You have the ability to run, so enjoy it.’ ”
A lot of John’s recent work has focused on the 50 states campaign, which he said made sense for an organization hoping to increase awareness about a cause. John and Laura often meet other families affected by Batten disease and other rare disorders when they travel to marathons.
Run Wild Missoula and race director Tony Banovich said there are many factors that drive runners, and running is a good way for people to share those goals.
“We love that we can be a way that people can use the event to raise awareness, raise money, to do both, spread a message,” Banovich said. “Whatever it may be, we are so excited that we can help [and] to be a part of their story.”
Banovich said there are about 1,100 registrants for Sunday’s full marathon and 3,300 for the half-marathon. Both races begin at 6 a.m.
Because of the heat, runners must be off the race course by 12:30 p.m., rather than the usual 1:30 p.m. Organizers said they may consider stopping the race even earlier if the temperature rises above 87 degrees.
Banovich said residents who live along the course can help by turning on their sprinklers to help passing runners cool down.
The Missoula Marathon is in its 11th year. Interested parties can check in, sign up to run or volunteer to help during the marathon at Saturday’s Marathon Expo from 8 a.m. to 4 p.m. in Caras Park. The full marathon begins at the TrailWest Bank in Frenchtown, and the half-marathon begins south of Missoula at Alpine Physical Therapy.
Both races conclude at Higgins Avenue and Front Street, at the north end of the Higgins Bridge. Spectators are encouraged and are often seen near aid stations, at the finish line or at other spots outside the designated participant-only areas.