Along the paved bike path between the pine trees of Cape Henlopen State Park, 6-year-old Piper Ursitti led the Team Hope Walk on her blue bicycle. Behind her, a small crowd of people dressed in purple followed for the 3.3-mile-long trek.
The Oct. 16 walk aimed to raise funds and spread awareness about Huntington’s Disease, a genetic and degenerative brain disease that affects movement, thinking and mood. The disease is caused by a single defective gene on chromosome 4, one of the 23 chromosomes that make up the human genetic code. An adult with Huntington’s disease has a 50 percent chance of passing it on to their children.
This year’s walk was organized by Amy Aungst and Bill Marconi - both of whom share a personal connection to the disease.
“I lived with this disease my entire life. Growing up, I watched my brothers and sisters slowly die from it,” Marconi said. “After moving [to Delaware] I decided to try and raise money to find a cure. My siblings got it in their 20s. You don’t even have to be an adult for it to hit you. My cousin passed away from it when he was only 10 years old.”
Aungst and Marconi have worked side by side organizing this event for years. “It’s always me and Bill doing this every year. He has become like family,” she said.
Aungst’s mother and uncles were diagnosed with Huntington’s Disease when she was young. After she married her husband Nicholas Aungst, she decided to get tested for the gene. After receiving a positive result, Aungst and her husband got involved with Team Hope Walk and have since adopted two children.
“I want to find something that makes sure [my wife] can have as much time as possible with her kids,” Nicholas Aungst said.
Team Hope Walk in Lewes is one of many sister walks that take place nationally each year. Since its beginning in 2007, Team Hope Walk has raised more than $20 million in 100 different cities all of which is donated to the Huntington’s Disease Society of America.
HDSA provides support for families experiencing the effects of Huntington’s Disease. The walks help raise funds for the HDSA’s Centers of Excellence, facilities that provide genetic testing and comprehensive medical care that includes access to psychiatrists, neurologists and social workers, according to Virginia GoolKasian, the Northeast development officer for HDSA. Currently, Center’s of Excellence provide services for 36 states across the nation. Funds raised also go toward clinical trials and research to find a cure for the disease.
The event on Saturday was filled with smiles, and as Nicholas Aungst put it, hope.
“It’s the same faces from year to year and knowing we are all here to support each other leaves me speechless,” Amy Aungst said.
For her, the disease doesn’t stop her from enjoying life. “I have two loving and crazy children,” she said. “You can’t let it bring you down. Even though you might be given a disease that is fatal, you still have a life to live and you need to make the most of it.”
A former version of this article stated that there were 35 Centers of Excellence in the United States. This information has since been retracted to reflect correct information. There are 54 centers of excellence that cover 36 states across the nation.