Running the Marathon for Those Who Can’t

By Katie McFadden

On Sunday, November 2, more than 50,000 runners will take on the NYC Marathon. Among them will be several locals. Allison Brody, a Breezy Point summer resident, will be taking on the marathon for the first time, on behalf of those who physically can’t run the marathon—those battling rare disorders, like her sister, Kristen.

As summer kids in Breezy Point, Allison and Kristen took advantage of all of the athletic activities they could from Rockaway Point Association sports camps at the ball field to Breezy Hoops to road races and even junior lifeguarding. But in her teens, Kristen started to experience gastrointestinal issues, and other unexplainable symptoms. It took about five years for the Brody family to get some answers.

In her early 20s, after years of appointments and medical mystery, Kristen was diagnosed with Hypermobile Ehlers-Danlos syndrome (hEDS). According to the Ehlers-Danlos Society, hEDS “is a heritable connective tissue disorder that causes generalized joint hypermobility, joint instability, and chronic pain.” Symptoms vary widely between individuals; Kristen experiences chronic pain, fatigue, gastrointestinal issues, and related conditions. While hEDS is considered rare, it’s being recognized and diagnosed more often as research and awareness grow, so hopefully, getting an accurate diagnosis won’t be so rare in the future. For more information on hEDS and other subtypes of EDS, readers can visit The Ehlers-Danlos Society website: https://www.ehlers-danlos.com/

“Getting diagnosed with a chronic illness like hEDS can feel like running a marathon—long, exhausting, and full of hurdles. I personally would never run an actual marathon (I hate running!), but many people with chronic or rare conditions can and do,” Kristen Brody said.

So, Allison is choosing to run the marathon on her sister’s behalf, to raise awareness for EDS and to raise funds for the National Organization for Rare Disorders (NORD). Through her sister’s diagnosis, and as a nurse at St. Francis Hospital, Brody has seen firsthand how rare disorders can impact people and how frustrating it can be for patients to not have answers for so long. “I chose to run with NORD because I feel with my sister, with anyone, no one should have to wait five to six years to get a diagnosis. I’ve seen other patients meet with doctors who don’t know how to treat them and they leave the hospital against medical advice because they’re able to get the care they need at home. So, I want to raise awareness for other rare diseases and encourage people to go to seminars so they can be aware of what other families might be going through, and maybe do more research into symptoms and medications that might seem strange, but are beneficial and would help them a lot,” Allison Brody said. “I also want to bring a voice to those with rare diseases and get a little more funding for them for research to get everyone the answers for what’s going on, so they can have support and maybe find a cure.”

Since deciding to run the marathon earlier this year and joining the NORD team of about 15 runners, Brody has been able to do some of that herself by participating in NORD’s advocacy events, such as an advocacy day at the Bronx Zoo. “They had different hospitals come to the Bronx Zoo and gave presentations and did outreach to members in the Bronx community, to get them to go to certain doctors that specialize in rare diseases. It’s a really special thing,” she said.

So, with personal and professional motivation behind her, Brody got to training in June, but as an avid runner, she’s always been in practice. “I’m a huge runner. I’ve ran the NYC half marathon twice and the Brooklyn half once,” she said. And she’s participated in more local events. “I’ve done the Sugar Bowl run, the 9/11 run every year and Buckley’s to Kennedy’s,” Brody said. But a full marathon will be a first.

Since June, Brody has picked up the pace, or rather, the mileage, training with long runs across the city. “I live in Flushing, but over the summer, I’ve been running into Rockaway all the time, and trying to run around Central Park and over the Queens Borough Bridge. I’m going to try 21 miles this week and try to do midtown into Brooklyn and back up through Queens,” she said.

Does she think she’ll be able to do the full 26.2 across the five boroughs on November 2? “I think I’ll be able to finish. I don’t know if I’ll still be running by the end, but I hope to at least cross the finish line. That’s what it’s all about,” Brody said.

Having trained with long runs, Brody says the biggest challenge, in addition to being sore, is the mental aspect, but she tries to stay focused on what she’s doing it for. “I keep reminding myself of my sister, and from going to a few events with NORD, I’ve met other people with rare diseases and I’m doing this for all of the people that will never have the opportunity to run a marathon or push their body like this. I remind myself that I’m lucky enough to run and I’m lucky enough to raise awareness for people like them who can’t do things like this,” Brody said.

With that, Brody has launched a fundraiser for NORD. With a goal of raising $5K, Brody is a little more than halfway there at $2,700, but she hopes to reach her goal by marathon day. “I’ve been posting it on social media and spreading it through word of mouth, and then I make those who donate nice friendship bracelets,” Brody said. Allison’s fundraising link can be found at: https://donate.rarediseases.org/fundraiser/6282054

On marathon day, Brody says her family, including Kristen, will be there to cheer her on. “My sister is gonna be there and I have a lot of family in Bay Ridge that will be there,” Allison Brody said. “It should be a good day!”

Kristen Brody added, “I’m proud of Allison for using her run to raise awareness—and I’ll be cheering her on from the sidelines, posters in hand, supporting my sister and the community of people living with chronic illness and rare diseases.”