Be A Miracle Maker
Become a Miracle Maker
PRF’s Miracle Makers make a HUGE difference in the lives of children with Progeria.
Miracle Makers are awesome volunteers who donate their time and energy to help PRF in various ways. We’re always in need of photographers, graphic designers, translators, fundraisers, ambassadors, event staff and more!
Join our extended family by hosting a bake sale, car wash, cornhole tournament, Bar/Bat Mitzvah project, Sweet 16 party, concert – choose your favorite activities to raise funds that support PRF’s work toward finding the cure for Progeria! Be creative, have fun, and invite your friends, family and coworkers to join in.
Working together in a variety of ways, we WILL find a cure. THANK YOU for sharing in our mission.
Some of Our Amazing Miracle Makers
In February 2022, a group of Nathan and Bennett Falcone supporters led by Anne French, a close friend of the Falcone family who has sadly since passed away, raised $15,000 in a Superbowl square fundraiser. She loved the boys deeply and wanted to honor them in the best way possible—funding research toward the cure. We’re grateful for Anne’s steadfast commitment to these boys, and her selfless drive to advance PRF’s mission. You can honor Anne and the boys by organizing a 2023 Superbowl square fundraiser, too!
In 2019, PRF partnered with Dr. Jianhua Mao, Professor and Chief Physician at The Children’s Hospital of Zhejiang University School of Medicine, to find and help children with Progeria in China. Since then, Dr. Mao and his colleague,
Dr. Jingjing Wang, have helped make it possible for children in China to obtain lonafarnib through a Managed Access Program (MAP). With MAP, the children can access lonafarnib through their physicians, instead of seeking access through the clinical trial, which would necessitate traveling to Boston—an option unavailable since March, 2020 due to COVID. Over these three years, he has also helped PRF find an unprecedented 14 children with Progeria in China (compared with 21 total in the past decade!), and has helped 20 children in various ways, connecting them with PRF’s vital programs and services, as well as the opportunity to join future clinical trials.
Sammy Runners are a group who have come together over the years in support of their friend, 26-year-old Sammy Basso of Tezza sul Brenta, Italy. The team has run numerous road races across Italy to raise Progeria awareness and
exemplify the importance of having fun, being together, and always being ready to go the distance for their friend. Sammy is able to be with his team throughout every race in a special wheelchair, pushed by the legs, lungs and hearts of his dedicated and growing group of friends. Che meraviglia!
For the Michienzies, supporting PRF has always been a family affair. Parents Debbie and Paul, and their three children Chris, Emily and Matt, lived down the street from Sam Berns and his parents, PRF Co-Founders Drs. Leslie Gordon and Scott Berns (all pictured here). The Michienzies have supported PRF in numerous ways over the years: Debbie has co-chaired PRF’s Night of Wonder gala; Chris and Emily have run on PRF’s Falmouth Road Race team; Matt provided the musical talent during ‘Sam’s Hoppy Life’ beer release party, and Paul has taken to the streets for PRF many times in Falmouth as well as the Boston Marathon. Needless to say, the Michienzies are a dedicated bunch, and we are so grateful!
Dr. Melania Abreu, a Mexican Geneticist, helps patients in Mexico to access the PRF Genetic Testing Program. A confirmed diagnosis of Progeria is the first step in getting the children the unique care they need. Thank you for giving these children a chance at longer, healthier lives, Dr. Abreu!
These amazing kids, all friends of Verona, NJ, resident Zoey Penney, have put their hearts and souls into fundraising to help their friend since 2016. Dozens of events and many lasting memories later, the members of ‘VeronaRocks’ are celebrating five years making a difference for Zoey. This energetic group of friends has raised funds through bike ride events, fashion shows, car washes, food drives, holiday caroling, and lots more – WOW, they ROCK!
For my senior leadership project, I hosted a charity softball/baseball game at my school to raise money and awareness for people with Progeria.
When I was in middle school, there was a girl named Hayden, and she had Progeria. She had a huge impact on me. Even though she passed away a few years ago, her love and determination still live with me. She was the most energetic, inspirational human being ever, always positive even in the tough times, and always found the good in things. Because of Hayden, I deeply care about this cause.
It doesn’t get any SWEETER than this! THANK YOU to Gavin, Lucas, Adam, and Josh for their lemonade stand. They raised $160 in support of Nathan and Bennett and PRF’s Pennsylvania Chapter.
Bek Wyzykowski (left), a talented crocheter of animal figures, came to PRF because, in her words, ‘I’ve been deeply touched by the work you do for the kids. I’m grateful that you have such a dedicated team searching for ways to treat and cure these kids, allowing them more time to be kids.’ On the right, Carlos enjoys cuddling with a sloth, one of Bek’s original
Stephanie Johnson has volunteered as a PRF Ambassador since 2015, providing transportation for children traveling to Boston for their clinical trial visits. Pictured here, Stephanie is returning from a December 2019 trip to the airport, dressed as Santa Claus! She’s happy to help, and always with a smile – even for 5:30am arrivals!
Michelle Kirschner (3rd from left) with her 2019 Make-a-Splash team. As president of the PA East chapter, Michelle tirelessly helps raise funds in honor of her close friends, Nathan and Bennett, and to support the Progeria community.
A heartwarming letter from Ottilie, a young PRF Miracle Maker.
Ottilie’s family is now a monthly donor!
Runner #1021, John Castellot, organized 49 runners – our largest team yet – as part of Team Tufts for Meghan in PRF’s 2018 Race for Research!
Volunteer spotlight! Long-time PRF volunteer, Alicia Sheridan, was a huge help in July, 2019, when Mateo from Argentina and Leticia from Brazil were in Boston for their final trial visits. Fluent in Spanish and Portuguese, Alicia was able to assist both with a fun photo shoot!
In December 2018, 35 awesome volunteers helped sell tickets for a 50/50 raffle held during a Boston Bruins game. This enthusiastic group had a blast cheering on the home team and raising $15,000 for PRF!
Local resident, Penny Papantonakis, volunteers to do office work at PRF headquarters in Peabody, MA. Earlier in 2019, she raised $700 for PRF, pooled from her 7th grade classmates and donation bins she placed in her family’s businesses. Such an industrious and sweet young lady!
“I’m not letting being deployed [in Afghanistan] stop me from donating! I’ve been struck in the heart by the bravery and aura that surrounds these courageous children with Progeria […] I’m humbled by their attitude and smiles. It helps me through tough times when I’ll start complaining about things here, and then these children give me a level of perspective….
Before I was a pilot, I was a music major in college and a junior/senior high school marching band geek. To see Sam [Berns] accepted by that group has been a lasting image and an inspiration to me that, with determination, we all can achieve what others may not think possible.
Thank you for the opportunity to help in a very small way by contributing to the ultimately successful cure for this disease!”
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