“In my tenure, this is the biggest outpouring that I have witnessed.”
Hereditary Spastic Paraplegia, type 47, otherwise known as “SPG47,” is an ultra-rare, newly recognized neurodegenerative disease, resembling cerebral palsy.
One of those cases is 4-year-old Molly Duffy, the daughter of Riverton Country Club’s head golf professional, Kevin Duffy, and his wife Angela.
Cure SPG47 is a non-profit organization that was founded in 2016 to educate others about this disease, while also trying to raise funds toward the most promising scientific research. In the United States, there are just four confirmed cases of this disease, according to Duffy.
“I have been a golf pro at the country club for five years, and a lot has happened during that time,” Duffy said. “The response since Molly’s diagnosis has been overwhelming, and it’s humbling to see the club help us.”
Riverton County Club in Cinnaminson has organized a fundraising golf tournament on Sept. 12 to raise awareness for the disease and funds to push much-needed research forward.
“We have been planning this event for nine months,” Membership Chairman Tom Kearns said. “We will provide various levels of sponsorship starting at $250 for the full day of food, golf and extra activities.”
According to CureSPG47.org, SPG47 is present at birth and causes severe, progressive spasticity and muscle weakness, as well as varying cognitive delays. In infancy, children with SPG47 have very low muscle tone, making it challenging for them to meet developmental milestones, such as walking.
As they get older, they will develop spasticity, robbing them of the mobility they work so hard to achieve. The goal of Cure SPG47 is to intervene before this becomes a reality.
“This is a very special event for Riverton Country Club. Ever since Kevin joined the club, he has become one of our own,” Kearns said. “The entire membership feels very close to the entire Duffy family, and we always love when Angela and Molly come to visit. In my tenure here, this is the biggest outpouring that I have witnessed.”
The event is scheduled to begin at 8 a.m. with a second tee time of 1 p.m. More than 50 sponsors have donated to this event as hole sponsors, paying for food and refreshments during the day or during the evening cocktail hour.
“When Molly was diagnosed in December 2015, we were really ripped apart inside,” Duffy said. “Since then, we have fought to educate others about this rare disease while also fundraise to get Molly the help she needs.”
Cure SPG47 has partnered with a team of scientific experts, and it has two research programs ready to begin. One is a gene replacement therapy study that is going to be run out of the University of Sheffield in England. With this technology, the hope is they will be able to replace the non-functioning DNA with working DNA and halt the progression of the disease. The second is an Induced Pluripotent Stem Cell study where they will be taking stem cells created from each of the families and testing them against pre-approved FDA drugs to see if they can produce a desired result of increased protein production.
All of the funds from September’s golf outing will go toward funding these research programs.
“Molly is one of four cases in the United States with this disease, and we want to raise awareness,” Duffy said. “She is the happiest kid in the world and we want to advocate for her.”
For more information regarding this fundraiser, check http://www.rivertoncc.com/curespg47.