A competitive Ironman in Kansas City has a niece with a rare form of muscular dystrophy – it’s what he focuses on for perspective and motivation.
When Ryan Sciara, co-founder of Cellar Rat Wine Merchants, raced in the Ironman Wisconsin triathlon in September, he was also raising funds on behalf of his niece Olivia. She has Merosin-Defecient Congenital Muscular Dystrophy (CMD), a rare condition with no cure or medical treatment. Only 340 registered patients have this form of CMD and it is estimated that there are less than 2,200 cases worldwide.
Sciara, a triathlete, had already signed up for Ironman Wisconsin before he decided to use that race as a platform to raise money. While researching the Ironman website, he saw that they had a program called “Your Race, Your Cause” to raise money and have the funds go to a charity of your choice.
“It came to me pretty quickly that I can do it for Olivia and CureCMD,” he says. CureCMD is a Kansas City-based organization focused on funding research, treatments and eventually, a cure for CMD. The immediate goal is to “get these therapies one step closer to clinical trials. All donations through CureCMD go directly to support these therapies not only for Olivia, but also for others just like her.”
Sciara’s sister-in-law, Sara, is involved with CureCMD and brought awareness of the organization’s work to his attention. He says, “I like that the money I raised goes directly to fund potential therapies for Olivia’s specific condition.”
Olivia was a key motivation while training for Ironman Wisconsin. Sciara says, “It would have been easy to cut a workout short, but I thought about her and how lucky I was to be able to swim, bike and run when kids with Olivia’s condition most likely will never walk.”
The full-distance triathlon involves a 2.4-mile open water swim, followed by a 112-mile bike and finishes with a 26.2-mile marathon, totaling140.6 miles for the event.
Wisconsin was Sciara’s first full-distance Ironman competition. He completed two half Ironman distance (70.3 mile) events, including Vineman in Sonoma County, Cali. in mid-July that gave Sciara a sample of the rigor needed to compete.
“The setting was in the middle of Sonoma wine country. The bike ride was amazing. I had a pretty good day and beat my time from last year by almost fifteen minutes,” Sciara says. “I was on track for an even better time, but I contracted some bug the day before the race and started getting sick on the run portion of the race. I was sick for a couple days after the race and ended up losing about eight pounds between racing, getting sick and not eating for nearly 40 hours. The first thing I thought of when I crossed the finish line was, ‘I have to double this distance on September 8? Ouch!’”
To prepare for such an intense physical trial, his training regimen was demanding. “I trained six days a week with one much-needed rest day,” Sciara says.
“The training gradually got longer for a handful of weeks, then tapered back down so I was nice and rested for Wisconsin,” Sciara says. He did at least two to three 100+ mile rides and two 20+ miles runs over four weeks leading up to the race.
Sciara and a group of training buddies all signed up for IM Wisconsin so they could train together on the same plan. He adds, “Ironman Wisconsin is also known for having arguably the best supported and spectator-involved events. It is also one of the hilliest bike rides of all Ironman races––so at least when I was struggling on the bike there were people cheering me on.”
Despite the challenge, Sciara was fully committed to training and competing. “It is pretty brutal when you look at the training on paper but I actually enjoyed the training,” he says. “It let me do some pretty serious thinking. It was also pretty taxing on the family. No one can train for an Ironman without a strong support system and I have one of the best. Also, having something and someone that I am training for helped to motivate me. I work with an awesome coach and train with a great group of friends. The sport, especially long distance triathlon, is a very supportive community.
“I went through an entire range of emotions on race day. I had many conversations with myself that day, reminding me of Olivia and why I was doing this. I saw my wife several times during the race and that helped get me through the tough spots.”