The Philadelphia/South Jersey WALK to End Hydrocephalus aims to raise awareness, fund life-saving research on Sept. 24
Candice Ursin is ready to make a difference in the lives of those living with hydrocephalus.
The Sicklerville resident lost her 9-year-old son, Adam, to the condition nearly three years ago, and this year she is serving as a co-chair for the Philadelphia/South Jersey WALK to End Hydrocephalus, which will be held on Sunday, Sept. 24, at the Philadelphia Zoo.
“I have never been a co-chair on a walk, but every year I’ve done a hydrocephalus walk,” Ursin said. “This is my first year being strong enough to be involved as a co-chair.”
Hydrocephalus — when fluid builds up in cavities deep within the brain — can cause brain damage when left untreated. The most viable treatment is to surgically insert a shunt into the brain to drain this excess fluid. This brain surgery is often not a permanent solution, and may very well occur again throughout a person’s life.
This was the case for Adam, who had the condition since birth but didn’t have a shunt placed until he was 14 months old. He went on to have more than 120 brain surgeries throughout his short life, but, according to Ursin, hydrocephalus didn’t keep her son down.
“He kept me going. He always had a smile on his face, even when he came out of surgery,” Ursin said. “That’s what keeps me going every day now, looking back on all the smiles and the happiness that I had.”
Like Adam, Theresa Carducci had hydrocephalus since birth — or shortly thereafter — although she wasn’t diagnosed until she was 15.
“Looking back, I had all the common symptoms and just no one picked up on it,” Carducci said. “As soon as I was shunted, all my symptoms went away.”
Carducci is another co-chair for this year’s walk, having spearheaded the event after attending a hydrocephalus conference in Minnesota last year. The walk is strictly volunteer-run, and there hasn’t been one in the Philadelphia region since 2011.
“It’s a lot of work,” Carducci said, adding she has high hopes for this year’s event, including 250 participants and $18,000 raised. So far, there are more than 130 walkers signed up, and the fundraising has surpassed the halfway mark. The money will benefit the Hydrocephalus Association, which is working to find a cure for the condition.
Just as important as the fundraising, however, is the awareness.
“People are being diagnosed at birth, so they’re living longer, too,” Carducci said. “Since people are living longer, you’re more likely to know someone (with hydrocephalus).”
Of the 20 teams signed up for the Philadelphia/South Jersey walk, 19 have somebody with hydrocephalus on the team. One of those teams is for co-chair Julie Shannon’s mom.
“It doesn’t sit well with me that sometimes when someone with hydrocephalus gets a headache, their only option is brain surgery,” Shannon, an Eastern Regional High School graduate, said.
While most people are diagnosed as babies, Shannon’s mom wasn’t diagnosed until she was 44.
“The doctors aren’t exactly sure how long she’s had it, but she was immediately put into surgery once they realized,” Shannon said. “That was her first of five surgeries to date. I want to learn more about the condition and what the Hydrocephalus Association does, and do whatever I can to help find a cure.”
Making more people aware of hydrocephalus is a step in that direction.
“When I tell people my mom has hydrocephalus, their response is, ‘What’s that?’ So few people have heard of the condition, yet more than a million people in the United States have it,” Shannon said. “Parkinson’s disease, another condition with a similar incident rate, receives $100 million from the government for research. The Hydrocephalus Association receives only $8 million, which comes out to $8 per patient. With more awareness, we hope that number will increase in the near future.”
Shannon said the response for the Philadelphia/South Jersey WALK to End Hydrocephalus so far has been “fantastic.”
“We are extremely grateful to have local sponsors PJW Restaurant Group, Ravitz Family Foundation and MedExpress Urgent Care on board to help us raise awareness. Additionally, we’ve been finding more and more people in the South Jersey and Philadelphia area that have hydrocephalus, and we wouldn’t have known if it wasn’t for this walk,” Shannon said. “This is an opportunity to not just raise awareness, but to bring together the hydrocephalus community in this area so they can share their stories and struggles, and know that they are not alone fighting this condition.”
Registration and check-in for the Philadelphia/South Jersey WALK to End Hydrocephalus are from 7 to 8 a.m. on Sunday, Sept. 24, at the Philadelphia Zoo, 3400 Girard Ave. Team pictures and refreshments are from 7 to 9:45 a.m. The opening ceremony is scheduled from 8 to 8:10 a.m., and the 5K Walk will run from 8:15 to 9:15 a.m. Post-walk activities are from 9:15 to 9:45 a.m. Anyone who attends is welcome to stay at the zoo until closing at 5 p.m. Entry is free. Parking is free for zoo members and $16 for non-members. Pre-registration is encouraged, although participants can also register the day of the event.
There is still a chance to become a sponsor for the walk. Email Carducci at [email protected]. To learn more or to register, visit www.facebook.com/PhiladelphiaSONJHydrocephalusAssociationWALK or http://support.hydroassoc.org/site/TR?fr_id=1252&pg=entry.
