PEABODY — When the 125th Boston Marathon kicks into gear on Monday, Oct. 11, two runners will be running to raise money for the Peabody-based Progeria Research Foundation (PRF).
Longtime PRF supporters Paul Michienzie of Foxboro and Bryan Dempsey of Miami, Fla. represent the foundation’s first official entries as a charity partner of John Hancock.
PRF President and Executive Director Audrey Gordon said she cannot wait to cheer the duo on to the finish line, 26.2 miles from the race’s traditional start in Hopkinton.
“We’re so thrilled to have two highly-coveted John Hancock charity entries this year,” she said. “And to have Paul and Bryan running their hearts out on behalf of the children and young adults with Progeria. Go Team PRF!”
Progeria is an extremely rare and fatal rapid-aging disease that strikes down children and young adults in their teens, usually by heart disease or strokes more commonly found in the elderly population.
Gordon said that PRF had identified 195 children with progeria, which represents about half the children who have the disease worldwide.
PRF was started in 1999 by Gordon, her sister Dr. Leslie Gordon, and Gordon’s husband Dr. Scott Berns, a year after their son Sam was diagnosed with progeria at 2 years old. He died in 2014 at age 17.
In November 2020, 13 years of research — which included four PRF-coordinated clinical trials culminated with FDA approval of Zokinvy (lonafarnib), the first-ever treatment for progeria — opened the door for children and young adults to get the drug by prescription instead of by clinical trials. The drug adds two and a half years to the life expectancy for someone who has been diagnosed. Without treatment, the average life expectancy is only 14.5 years.
“We’ve learned that now instead of talking about children with progeria, we are now talking about young adults as they are living longer,” Gordon said.
The FDA approval was only the beginning of what turned out to be a huge windfall for PRF.
Three days after approval, PRF announced that it had entered into an agreement with Eiger BioPharmaceuticals (Eiger) which called for Eiger to sell a Priority Review Voucher for $95 million. Under the terms of the voucher program, PRF received 50 percent of the net proceeds in recognition of PRF’s steadfast work in funding and co-coordinating the clinical trials.
Michienzie and Dempsey have some history with the Boston Marathon. Both were in the crowd with their family and friends near the finish line during the tragic bombings in 2013 — 30 feet from the second explosion — an experience that led to their compelling desire to run the race. Dempsey has returned annually to cheer on the runners of his “Boston Strong” family. He ran the race virtually in 2020. This year will be his first time running it live through the streets of Boston and the seven other communities that make up the official race course.
“Watching so many people from myriad walks of life and various levels of health cross the finish line each year, and feeling the energy, passion and pride of the people of the city of Boston cheering on the runners has provided additional motivation,” he said. “Out of tragedy, triumph. Out of hatred, love. Out of fear, courage. Love is the key ingredient, and triumph through the clear mission of PRF. The courage of kids living with progeria is unfathomable. Let’s honor that courage by donating to PRF. The money we raise will go to support PRF and will be used to find a cure.”
Like Dempsey, this is Michienzie’s first time running the marathon in person. His training has included the challenging Spartan Beast obstacle course.
“I’m running in memory of Sam Berns and for every child who is coping with progeria to help find a cure,” Michienzie said. “I’m also doing it because I’m inspired by the strength, compassion and hard work (that) Drs. Leslie Gordon and Scott Berns exhibit each and every day on behalf of these wonderful kids. And I’m running in memory of those who died, were injured and/or survived the 2013 marathon with me.”
Both runners are hoping to raise $10,000 each and are more than halfway to their goals.
