For one local family, an October golf outing is about much more than a day on the course.
The inaugural 65 Roses Charity Golf Outing will bring golfers, businesses, friends and families together on Oct. 9 at Indian Spring Golf Course in Marlton to raise money and awareness for cystic fibrosis, a genetic disease that has become deeply personal for the event’s organizers.
The inspiration behind the outing is Aubrey, the youngest daughter of organizer Dan Byrne, who was diagnosed with cystic fibrosis through newborn screening.
The family considers itself extremely fortunate. Aubrey was born at a time when an effective treatment for her form of CF had already been approved for children as young as 4 months old.
But after becoming part of the cystic fibrosis community, her family quickly learned that isn’t the case for everyone.
Different genetic mutations can cause CF to affect people in different ways, creating significant challenges in treating the disease. Highly effective modulator therapies can now benefit approximately 90% of people with cystic fibrosis, but an estimated 5% to 10% still do not have an effective treatment option.
That gap is one of the driving forces behind the new golf outing.
“The CF community is one as a whole and is dedicated to keep going in terms of research, fundraising, etc. until 100% of those with CF has a cure,” Dan shared.
The event is intended to raise awareness of the disease, honor those who have died from CF and recognize those whose experiences helped fuel decades of research and medical progress. The group also wants to celebrate advances that have transformed cystic fibrosis from a disease once associated primarily with childhood into one where many patients are now living well into adulthood.
Most importantly, they want to help continue that progress until effective treatments – and ultimately a cure – are available to everyone with CF.
The outing takes its name from a phrase familiar to generations of families affected by the disease.
“65 Roses” originated decades ago when young children had difficulty pronouncing “cystic fibrosis” and instead said “65 Roses.” The phrase has since become a symbol of hope and strength within the CF community.
The idea of hosting a charity golf outing had been discussed for years among family and friends who had participated in similar events but had never found the time to organize one of their own.
Aubrey’s uncle, Matt Byrne, became the driving force behind turning that idea into reality. Close friends Giovanni Pizoli and Nick Gardiner have also played major roles in organizing the outing, recruiting golfers and securing sponsors.
“We’ve been working for months on this together, and are so excited to see it come to fruition,” Dan shared.
All proceeds will support the Cystic Fibrosis Foundation’s Philadelphia Chapter and its work involving research, patient care programs, advocacy and resources for individuals and families affected by CF.
65 Roses has set a first-year fundraising goal of $5,000 to $10,000 and hope to register between 125 and 140 golfers, with additional guests attending the dinner afterward.
Community support has already exceeded their early expectations.
Friends, co-workers, neighbors, businesses and even strangers have offered their support, and at least 15 businesses and organizations have signed on as sponsors. Elite Power Systems became the outing’s exclusive Platinum Sponsor after reaching out early in the fundraising effort.
“What has been most inspiring throughout this process is seeing how willing people and organizations are to support a cause, even when they may not have a personal connection to cystic fibrosis or know me well,” Dan expressed.
The outing will feature a traditional scramble format with a 1 p.m. shotgun start on Oct. 9. A banquet dinner will follow the round and include awards, prizes and an open bar.
Beyond raising money, organizers hope the event gives participants a better understanding of a disease whose challenges are not always apparent to others.
CF can be a “silent” disease, with many of the daily struggles and treatments patients face largely invisible. Golfers and guests should leave understanding both those challenges and just how dramatically treatment has progressed during the past two decades.
Research, specialized care and new therapies have allowed many people with CF to live longer and healthier lives, progress the family says was made possible by researchers, caregivers, advocates, donors and families working toward the same goal.
The work has also had implications beyond cystic fibrosis. The Cystic Fibrosis Foundation’s approach to investing in research and drug development has helped demonstrate how philanthropy can accelerate medical innovation and the development of new treatments.
For the group, however, success in October won’t be measured solely by the final fundraising total.
They hope people walk away knowing more about cystic fibrosis, the progress that has been made and the work that remains. They also hope the outing establishes a community tradition that grows each year.
Dan already knows one thing going into the event. “Seeing friends, family members, colleagues, sponsors and community partners come together around a shared purpose has already been incredibly rewarding.”
The plan is for the 65 Roses Charity Golf Outing to return annually.
“This year is about getting it stood up and off and running. In future years, we hope to continue to grow on the success and hopefully one day fully celebrate the cure of cystic fibrosis.”
Golfers and dinner guests can register or learn more at 65rosesgolfouting.com. Those unable to attend can make a direct donation to the Cystic Fibrosis Foundation through the outing’s fundraising page at give.cff.org/annualfund/65rosesgolfouting.
Donnelly.Media, the parent company of the Sun Newspapers, is a proud sponsor of this inaugural event.
