WHAT'S YOUR REACTION?

KEVIN AND ANGELA DUFFY’S DRIVE
FOR A CURE FOR MOLLY

 

The focus of the golf world centers itself this week in St. Louis for the 100th PGA Championship. The attention will shine brightly on the golfer able to play the best golf and hold high the famed Wannamaker Trophy. Galleries will applaud the successes and the winner will clearly reap a number of career wise benefits. 

But the story of the PGA of America goes far beyond who will win its flagship event.

Over 29,000 men and women comprise the rank and file of the largest member sports organization on the planet. There are stories involving local golf professionals that tug the human heart and include the people who matter most to them — their family.

molly
Kevin Duffy has been member of the PGA for several years. Like many others he apprenticed before being given the opportunity to attain a head professional position. Duffy has been at The Riverton Country Club in Cinnaminson, NJ, for six years and worked at the Philadelphia Cricket Club prior to coming to RCC. But the daily task for Kevin goes beyond the usual duties associated in being a head golf professional.

For Kevin and his wife Angela the world centers around their four-year-old daughter Molly. From her birth Molly was always lagging behind the typical baby and toddler milestones. After months of searching for answers, Kevin and Angela finally received the diagnosis of SPG47.  Shockingly, Molly was the first person in the U.S. to receive an SGP47 diagnosis, while there were only 7 other documented cases worldwide at the time.

The disease is called Hereditary Spastic Paraplegia Type 47 (SPG47), an extremely rare, newly recognized genetic disorder resembling cerebral palsy present at birth and causes severe, progressive spasticity and muscle weakness, especially in the lower limbs. Molly was the first person in the U.S. to receive an SPG47 diagnosis, while there were only 7 other documented cases worldwide at the time. With so little known about SPG47,  Molly is faced with having low muscle tone until she is about 7-8 years old. Unfortunately, by the time she is 13-15, the disease is expected to progress to “hypertonia,” where the muscles become so spastic and tight that she may be unable to use them.

For Kevin and Angela the reality of what Molly faces became the only thing that mattered in their lives.

“Juggling my responsibilities at Riverton Country Club along with Cure SPG47 and other family responsibilities can be a challenge at times but I have a great support network that starts with my wife, Angela. There is no one that I could ask to have by my side on this journey besides her and without her none of this would be possible,” said Duffy. ” She is the one behind the scenes making so much happen for our family and is Molly’s number one advocate. I am also very fortunate to have an amazing golf staff serving the members back at the club when I am not there, which allows me to be focus on my family and be present when I am with home.“

 Upon hearing the news the membership at Riverton acted swiftly to assist the financial ordeal faced by the family. A plan was created with a golf tournament at Riverton to raise money and overall public awareness. The initial goal was to raise $50,000. 

 molly


“Shortly after announcing the event to the membership, it was clear that everyone wanted to help and this was going to be a big event! We ended up having to open sign-ups for both a morning and afternoon shotgun with 245 for golf and more than 300 in attendance for dinner. It was by far one of the most impressive events that I have ever had the pleasure of being a part of,” said Duffy. “The event ended up making more than $225,000 in the first year, which was enough to fund an entire year of gene therapy research and WAY beyond my wildest dreams. This was by far one of the most humbling days of my entire life. To see the love and support pour out of the members of RCC for my family, to help give my daughter a better life, brings tears to my eyes every single time I think about it. It speaks to how great the membership is at Riverton CC and how amazing of a club we have and I will be forever thankful for what they have started.”

 

Riverton is hosting the 2nd Annual, “Golf for a Cure,” benefiting CURE SPG47 on September 11. Those wishing to participate can do so can visit www.rivertoncc.com/ curespg47. The support received extends to the Philadelphia PGA Section. “The Philadelphia PGA stands firmly behind Kevin and Angela Duffy in their unwavering fight to find a cure for this rare disease that has impacted their beautiful little daughter Molly,” said Geoff Surrette, Executive Director, Philadelphia PGA Section. “As a PGA Member, and Head Golf Professional at Riverton Country Club in Cinnaminson, NJ, Kevin has a tremendous responsibility and puts in long hours every day. However, this has not stopped his fight for Molly and we could not be more proud of his dedication and determination in raising money for research and treatment of SPG47.”

 

Head golf professionals are the friendly face one sees when heading to play golf. They are the people who take the time to make sure one’s time at the golf course goes as well as can be. Now that effort has been focused on supporting Molly in giving her every opportunity to have the best quality life imaginable. Today, Molly continues to make advancements both physically and cognitively, but is unable to walk independently, and requires the use of a walker. While her path forward has many challenges, the Duffy’s maintain an unwavering passion to continue raising both awareness and funds to direct towards the most promising scientific research.

 

While Molly currently attends daily therapy sessions including physical therapy, occupational therapy, speech therapy and others, there are no current treatments for the disease. That is why Kevin and Angela founded Cure SPG47, and have worked tirelessly to raise awareness and funds for the research and treatment of the rare disease.

 

Yes, the PGA Championship will crown a winner this week. However, there are human stories that go far beyond what happens at Bellerive. Kevin as a member of the PGA of America has been on the front lines on serving others. Incredibly, the spirit to help has returned the favor in supporting a man, his wife and daughter in the most meaningful way possible.

 

 

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For more info go to:

http://www.curespg47.org/

WHAT'S YOUR REACTION?