Before the age of 1, Becky Goldberg Petty’s son, Simon (pictured), already had two brain surgeries to treat a condition called hydrocephalus, and there is a chance he could need another surgery at any moment.
On Sept. 7, at Beaver Island State Park, patients, family members and local businesses will raise awareness and critical funds for the brain condition that has no cure and that affects more than a million Americans.
More than 300 people will take part in the seventh annual Walk to End Hydrocephalus. This annual fundraiser, and others like it across the country, is a primary means of funding for research on a life-long neurological condition that can only be treated with repeated brain surgeries.
Hydrocephalus is a chronic, life-threatening condition that can only be treated surgically. The predominant treatment is the insertion of a small tube, called a shunt, into the brain to drain excess cerebrospinal fluid. Shunts save lives but frequently malfunction, become infected, or blocked. It is not uncommon for a person with hydrocephalus to have ten or more shunt-related brain surgeries during the course of their lifetime and some individuals have more than 100 surgical procedures. Each surgical procedure brings the risk of unknown long-term cognitive and health effects.
Participants in the walk hope to raise more than $30,000 to support the Hydrocephalus Association’s research initiatives and current education and outreach programs. The Hydrocephalus Association began funding research in 2009. Since then, HA has committed over $7 million to research, making it the largest non-profit, non-governmental funder of hydrocephalus research in the world.
The Western New York Walk to End Hydrocephalus is one of 42 events held across the country that are all 100% volunteer-led by members of the hydrocephalus community.
The event features a free kid’s zone with lots of games and a balloon artist, face painting and magic, a visit from Sabre Tooth, the WNY Super Heroes and Ryan the Bag Piper. Families with hydrocephalus are invited to tell their story in poster format to be displayed on Ambassador Avenue. Participants raising $75 or more will receive a HA WALK T-shirt.
Contact Larry McKenzie at [email protected] or 716-308-3412 for more information. There is still time to register to participate as a team or an individual walker by visiting http://Support.hydroassoc.org/2019westernnywalk or by calling the HA national office at 888-598-3789, ext. 113, or emailing [email protected].