Eighteen years ago, Linda Rozell-Shannon made a deal with God.
“I prayed and said ‘God, if you give me a surgeon that will remove this tumor from my daughter I’ll dedicate my life to this,’” said Rozell-Shannon, a Niskayuna doctor.
She found a surgeon, all the way in Arkansas, and after he removed her daughter’s hemangioma, Rozell-Shannon asked him to start a foundation with her. Now, the Vascular Birthmarks Foundation has networked 60,000 children into treatment and is the leading nonprofit dedicated to the cause in the world.
One in 10 children are born with a vascular birthmark, like port wine stains or hemangiomas, but only 1 in 100 require an evaluation by a specialist. VBF lends a necessary hand, said Rozell-Shannon, because most pediatricians aren’t trained to refer babies to specialists and frequently tell parents the marks will go away.
“Because it’s growing or potentially obstructing their vision, breathing or seeing … it’s a big deal. Pediatricians think it’ll go away but it’s not true,” said Rozell-Shannon.
VBF works with families to get an accurate diagnosis, a treatment plan and coordinate with insurance companies.
Kyla Graziane of Guilderland said she would have been lost without VBF, which stepped in when her son had a vascular birthmark on his face.
“VBF has been so supportive of everything. Knowing other kids that have it and other parents that have dealt with it has just been amazing,” said Graziane. “We were so lost as to what to do before we ran into Dr. Linda.”
Graziane’s son, Chase, will be 2 years old in June and is the “Birthmark Champion” at the Fourth Walk/Run for Birthmarks on Friday, May 4, at The Crossings in Colonie.
“It was pretty large on his face right under his eye and … they were talking about it affecting his vision quite a bit,” said Graziane.
Laser treatments and surgeries have helped shrink the mark and it’s now in the process of going away on its own, said Graziane.
All proceeds from the walk/run go toward a medical conference VBF holds each year in New York City. The foundation pays to send families for a free conference and free clinic appointment. It costs $500 to send one family and covers hotel, breakfast and lunch for each.
“About 20 doctors come and do lectures all morning and all afternoon we have a clinic team who sees patients,” said Rozell-Shannon. “We’ll have 100 clinic appointments in one day and they all leave with a treatment plan.”
VBF does all its work virtually, with no home base, and relies on donations and philanthropy to keep ticking. The campaign “Make a Miracle Happen” lets donor sponsor a family.
“We run on a pretty low budget for an international organization that networks a lot of people,” said Rozell-Shannon.
She also coordinates a program similar to “Operation Smile” that sends eight doctors to countries with no experts on vascular birthmarks to lecture and train and operate them.
The Kids Fun Run starts at 5:45 p.m., the 5K starts at 6 p.m. and the 1-mile walk steps off at 7