(literally) climbing for a Cure: one sanfilippo dad's Legacy of Advocacy and Inspiration

Carl Kapes - current chair of the National MPS Society's Annual Fund - has turned his personal tragedy and trauma (his two sons' devastating Sanfilippo Syndrome diagnoses) into a mission of hope and impact. And he's done it by leveraging his leadership experience, athletic abilities (Carl's a former Villanova baseball player) and determination to do everything in his power to save his two sons' lives. And that includes scaling a few of the world's tallest mountains (despite zero prior mountain climbing experience) and, in the process, raising much needed awareness and funding for the fight against Sanfilippo Syndrome.   “As a parent in this situation, you have a choice—you can cry about it or pick yourself up", said Carl. "And if we can’t save our children, we can still help others down the road.”

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Back in 2012, Delaware dad Carl Kapes embarked on a remarkable journey to raise awareness and funds for Sanfilippo syndrome, a rare and devastating neurodegenerative disorder. Motivated by his two sons, Ryan (Sanfilippo type A, forever 16) and Brayden (Sanfilippo type A), Carl climbed Mount Kilimanjaro, the highest peak in Africa. Other treacherous mountain climbs would follow.  “At the time, I thought to myself, 'if I could actually do this, I bet I could get a lot of people to support the cause'.  And it worked.”

As a former Villanova baseball player, and an engineer by profession, Carl applied his unique skillset and determination to this cause. His Kilimanjaro climb, documented in partnership with The Preston and Steve Show from WMMR radio station in Philadelphia, captured hearts and raised over a million dollars for Team Sanfilippo Foundation.

He and his team created a few documentaries about their journey, as fundraising vehicles to bring in the money they so desperately needed. Two such films are The Weight of A Mountain, a short film documenting the efforts of parents whose children have Sanfilippo Syndrome, and their journey to the ends of the earth in an effort to create hope where none existed; as well as At The Edge of Hope (check them both out, you will be inspired). 

​These efforts not only helped Carl and his team fund critical research but also brought much-needed visibility to this rare disease (this was before social media became the phenomenon that it is today).
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Today, Carl continues to channel his passion as a board member of the National MPS Society, where he chairs the Annual Fund. This fund is a cornerstone for supporting families and advancing research. "The National MPS Society is about more than just finding treatments and cures", Carl explained. "It’s also about supporting families and caregivers in their MPS journeys".

Carl's courageous and unwavering commitment over the past decade plus has helped to inspire other rare-disease dads (like myself) in similar shoes to keep fighting - not just for our own child(ren), but for all children impacted by this disease. "We're a family", says Carl, "Yeah, it's a family that none of us ever wanted to be part of, but it's a family that you want to have in your corner along this journey". 

Carl’s journey from mountain peaks to boardrooms shows that every effort, no matter how it begins, can have a profound impact. But it all started with finding the courage to take that first step up the proverbial (and literal) mountain for his boys.

"Everybody is good at something", Carl insists, "and we can all contribute in our own unique ways. It takes an army".

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(QUICK) CLIP #1 -- CARL ON HOW HE DECIDED TO CLIMB MOUNT KILIMANJARO FOR A CURE

Abeona needed the money. So we got together with other foundations to pool our money together and make it happen. And that's when I decided to climb Mount Kilimanjaro. "

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​CLIP #2 -- CARL ASKS PHILADELPHIA-BASED RADIO STATION WMMR TO JOIN HIM

Growing up in the Philadelphia area, I have been a fan of WMMR my whole life.  And so I thought it would be really cool if they would be willing to come along with me on the Kilimangaro climb. Teaming up with WMMR helped us tremendously with getting the word out and raising awareness about Sanfilippo Syndrome"

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WATCH THE FULL INTERVIEW HERE:

“As a parent in this situation, you have a choice—you can cry about it or pick yourself up", said Carl. "And if we can’t save our children, then at least we will be helping others down the road.”

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