If you’ve ever had a blister, you know how painful they can be. Imagine they were all over your body. Blisters equivalent to second-and third-degree burns, both internal and external. You live every day covered in bandages from head to toe, which are changed daily. Every other day, you soak in a bath of bleach or vinegar just to keep infection away. Sounds painful, right? Add in daily antibiotics and a transfusion every four weeks.
This is the life of John Hudson, a 14-year-old boy from Staten Island. He suffers from Epidermolysis Bullosa (EB), a life-threatening genetic skin disease. Despite his pain, John Hudson remains grateful for those who surround him with love and support, especially his family. On March 19, John Hudson’s aunts, who live in Breezy Point, will be joining his mom, Faye Dilgen, for a “Sister Act.” They will run 13.1 miles in a half-marathon to support John Hudson and raise money for the EB Research Partnership, a nonprofit foundation that is dedicated to finding a cure for this disease that affects up to 50,000 people in the United States alone.
Terry Purpura Johnson, Katie Purpura Smith and Mary Hickey Purpura, all of Breezy Point, will be joining the six-women team that will run the United Airlines NYC Half Marathon on March 19. They join Faye Dilgen, John Hudson’s mother, their sister Amy Purpura Smith of Westchester and Dilgen’s sister-in-law Patricia Bradley of Brooklyn. None of the women would call themselves runners. “The majority of my sisters have never run a day in their lives,” Dilgen said. But then again, “neither has their nephew, John Hudson, and he likely never will.” Yet his aunts didn’t hesitate to offer their support when asked to run the half-marathon. They’ve been there for John Hudson since the day he was born. “He was diagnosed at birth and his aunts have been babysitters, they’ve gone on trips to the Cincinnati Children’s Hospital, they’ve done wound care, they’ve done everything for him and this is a great way for them to continue what they’ve always done, but in a different way,” Dilgen said.
Each team member has a minimum fundraising goal of $1,500, for a total of $9,000 for the EB Research Partnership. This is the largest nonprofit dedicated to funding research aiming at treating and curing EB. The organization, founded in 2010, was formed between the Silver and Fullmer families, along with their close friends, Jill and Eddie Vedder, the lead singer of Pearl Jam. The organization has raised more than $12 million and is putting it to good use with 17 research projects underway. When John Hudson was born, there was no research being done. Today, he has the option of undergoing one of four clinical trials, and he will be participating in one at Stanford University in the spring. “We never thought a day would come where we’d have an option of clinical trials, so this is very exciting for us,” Dilgen said.
Yet with no cure out there, there is still plenty of work to be done. Dilgen says that finding a cure for EB will mean good news for those suffering from other genetic disorders, such as Parkinson’s Disease. “The beautiful thing about this research is that when they find out how to cure EB, they’ll cure other genetic diseases. When they find a way to make this work, it will help many other people. They need to figure out how to make gene therapy work, and a cure for things like Parkinson’s will come when my son’s cure comes,” Dilgen explained.
The “Sister Act” team of Dilgen and her sisters is just one of many teams running to support the EB Research Partnership. Although they have a minimum fundraising requirement of $9,000, they’re hoping to surpass it. “There’s another pair of sisters running for the foundation who have raised $20,000 and my goal is to blow these sisters out of the water. My sisters and I are planning a full on attack,” Dilgen said. The “Sister Act” team has an online fundraising campaign to help raise money (https://www.crowdrise.com/team-eb-nyc-half-2017/fundraiser/sisteract3). As we go to press, they have only reached $2,800, but they’re hoping that a fundraiser at the Bungalow Bar will help give them a boost. On Saturday, February 11, from 5 p.m. to 8 p.m., all are welcome to have a good time for this great cause. For $40, you get beer, wine and liquor, plus a DJ. There will also be 50/50 chances sold to help raise funds for the cause.
Dilgen believes Saturday’s fundraiser will be a success. “The people in Breezy Point and Rockaway have always been supportive of John Hudson. The community down there is just lovely. They’re such generous people and they’re always trying to help John Hudson anyway they can. I’m sure we’ll have a good turnout.”
If you can’t make the fundraiser, but still want to donate, be sure to check out the Sister Act team’s crowdrise.com fundraiser, at noted above. For more information about the EB Research Partnership, head to ebresearch.org. If you’d like to cheer the sisters on at the NYC Half Marathon on March 19, look out for the women in green and blue tutus.BLOG COMMENTS POWERED BY DISQUS