As Pound the Pavement for Peter, a Brookhaven fun run named for a boy who died of a rare disease, celebrates its 10th year this month, the woman who helped start it said she’s “overwhelmed in a good way” about the effect the race has had.
“I am just thrilled that his life is continuing to make such an impact for children and families like him,” said Brookhaven resident Anne Park Hopkins, whose son Peter died of peroxisomal disorder just a week before his fourth birthday in 2010. “I also am just overwhelmed with emotion that the community both our small community as well as the community at large continue to support this race in such a strong way. It says a lot about God’s plan that someone who passed away nine years ago, his life is still making a difference. I think that is incredibly powerful. It inspires me to think about the impact his short life has made. It shows we can all make an impact in a powerful way as well.”
The 5-kilometer race March 23 at the Capital City Club will benefit programs that aid children with peroxisomal disorder and other rare diseases. According to the National Center for Biotechnology Information, a peroxisome is a small organelle that is present in the cytoplasm of many cells and that contains the reducing enzyme catalase and usually some oxidases.
“There was a genetic defect in every peroxisome in his body,” Hopkins said. “Because they’re in every cell of your body, it affects every system. He was deaf and blind, was fed through a tube, never talked, sat up or walked and was in a wheelchair. More than half of these children die before the age of 1.
“What we’re hoping is with more awareness, we’re able to diagnose these children earlier and treat them earlier. With there being more awareness, hopefully we’ll also able to get more research out there and focus the medical community on this as well as diseases that are similar.”
The idea for the race began when Hopkins and a prayer group of 10 women she knew, called Peter’s Pals, was formed in 2009 around the time Peter had his first surgery. She and her husband Matt have two healthy children, Brennan, 8, and Evelyn, 6. Hopkins is part of a group of 25 women leading the race, with committees headed by Liza Davidson, Emi Gragnani, Angela Cunningham and Sumner Bradshaw, Anne Park Hopkins, Toney Peer, Maureen Smith, Morgan Smith, Martin Yoder and Sarah Dozier.
This year’s event will benefit three nonprofits: the Global Foundation for Peroxisomal Disorders, which funds and promotes peroxisome disorder research and helps families and professionals through educational programs and support; the Adaptive Learning Center, which enables children with special needs to learn, play and grow with other students in regular preschool classrooms; and Children’s Healthcare of Atlanta’s Medically Complex Care Program, which, allows pediatric patients with multiple doctors and medical fragilities to receive specialized care all in one central location in a collaborative environment.
From 2017 through this year, the portion of the funds going to the foundation is being earmarked for a three-year Ph.D. fellowship at the National Institutes of Health’s rare disease lab to focus on peroxisomal disorder research. Hopkins said she hopes more research will lead to earlier diagnoses of children with this rare disease and others, helping extend kids’ lives and improve their quality of life.
Dr. Margaux Charbonnet, the Medically Complex Care Program’s medical director, said the pilot program started in April 2017 as a way to treat kids with chronic and complex illness. It includes patient visits to Children’s Healthcare’s hospitals and its Center for Advanced Pediatrics, which opened in July in Brookhaven.
“These are kids who do not fit well into an established program, so they’re at risk for becoming ‘medical orphans’ with no place to go to unify their care,” Charbonnet said. “They see many sub-specialists and depend on medical technology like feeding tubes, tracheotomy tubes or ventilators. We partner with the pediatricians and the specialists, coordinate their care and help them navigate the complicated medical system.”
She said Pound the Pavement “brings awareness to a patient population that is not at the forefront.”
“These are some of the most vulnerable kids in our system who really need a team of people to take ownership of their care,” Charbonnet said. “That’s what our team does. We optimize the child’s health, improve the patient and family experience and try to decrease the cost of care.”
Pound the Pavement drew about 700 participants in 2018 and expects to have as many again this year. “We’ve already raised over $100,000 and hope to raise even more,” Hopkins said. “Last year we raised over $150,000 and we should raise at least as much this year.”
For its 10th anniversary, the race organizers will be celebrating the milestone by thanking those who have helped make it a success.
“We’re doing some fun things to commemorate it,” Hopkins said. “We have family and corporate sponsors who have participated in the race since the first one — for 10 years. We will be recognizing those and just celebrate that here we are, after 10 years, and the race is still growing, and making an impact for families and children like Peter.”
Race registration is $35 (plus a $3.50 fee) for adults and children 11 and older online through March 21, and after that it increases to $40. Participants can register in person on race day. Registration begins at 7:30 a.m. and the race starts at 8:30 a.m. The event will also include games, prizes, a DJ, Chick-fil-A biscuits, coffee and other items.
Hopkins said the race is proof positive that a group of individuals banding together can make a huge difference.
“Perixisomal disorders are such a rare condition that there are very few events that are raising awareness for it, so I think it’s very important,” she said. “I would say rare diseases and children with disabilities, in general, are really what we want to raise awareness about. There are so many rare diseases and it creates such a feeling of isolation for the parents and families because they don’t have a group to collaborate with and find support in.
“I think raising awareness for families like this and children like this is an important thing to do because there are so many people that don’t have the hope and community they could if there were more awareness around rare diseases and struggles around it.”
For more information or to register, visit www.poundthepavementforpeter.com.