Manayunk takes strides for Hydrocephalus awareness

A portion of Main Street in Manayunk transformed into a track on Sunday morning for the Hc River Run/Walk. The community came together to raise money for Hydrocephalus, a condition – common in young children – in which fluid accumulates in the brain. 

Roxborough resident and event organizer Marybeth Godlewski says most people have never heard of the condition. She says that’s because Hydrocephalus is a low-profile disorder. It can result in the enlargement of the head and can sometimes cause brain damage. Though it affects over one-million Americans, public awareness about the condition is low and research funding is negligible. Godlewski is hoping to change that.

Her motivation is immediate; her daughter, Emma, was born with a Chiari malformation, a structural defect where the brain and spinal chord meet. Her treatment, which consisted of a series of misdiagnoses, 35 aggressive brain surgeries and multiple near-death experiences, left Emma with some significant brain damage and lasting Hydrocephalus.

Godlewski became an activist for Hc awareness when her daughter was an infant. Sunday’s events on Main Street have now become an annual celebration. The morning kicked off with local entertainer Carmen Magro singing the national anthem. That was followed by local fitness expert Jackie Ashenfelter of Flip Fitness getting the crowd warmed up with some exercise in the middle of Main Street in front of Mad River Bar and Grill, which hosted the day’s events. 

The 5K run that followed took participants down Main Street and along the towpath. There were teams of runners and walkers including families of children suffering from Hc, some of which participated in the walk from their wheel chairs.

After the race, trophies were awarded to the winners and everyone was treated to food from local eateries such as Chubby’s Steaks and Marchiano’s Bakery. There were also games for the kids such as a sledgehammer bell-ringing event. The festivities continued into the afternoon when Carmen Magro and his band took to the stage inside Mad River where he debuted songs from his new CD. 

Fourth District Councilman Curtis Jones, Jr. and State Rep. Pam DeLissio of the 194th District attended the event. Both politicians said they were going to introduce new legislation for greater Hc funding and awareness. Incidentally, November is Hydrocephalus awareness month in the state of Pennsylvania and people close to the issue believe that Godlewski is responsible for that.

Here are some additional facts about Hc, provided by Godlewski:

• The only treatment option requires invasive brain surgery and has a 50-percent failure rate after just two years, which is the reason so many have to have multiple brain surgeries just to stay alive.

• The standard treatment, a shunt, was developed in 1952

• 1 million people have Hc in the US.

• There are 180 different causes of Hc.

• There is very little research on Hc. The NIH spends 60-cents per person with Hc per year compared to $300 per person per year with Juvenile Diabetes though the prevalence of the disease is the same.

• 60-percent of children with Hc are not independent as adults and require assistance.

• 50-percent of children with Hc score 80 or below on standardized intelligence tests.

• It costs the United States $1 billion per year treat Hc.

To learn more or see how you can help you can visit the local Hc website

Want a digest of WHYY’s programs, events & stories? Sign up for our weekly newsletter.

It will take 126,000 members this year for great news and programs to thrive. Help us get to 100% of the goal.