BY INDIANA NASH
NISKAYUNA — The Vascular Birthmark Foundation, founded by Niskayuna resident Linda Rozell-Shannon, treated its 100,000 patient on December 7.
When Rozell-Shannon’s daughter was born with a hemangioma (or a vascular birthmark), she didn’t know where to turn.
“No one was there for me in 1994. Because of that, I vowed to God that I would dedicate my life to this cause,” Rozell-Shannon said.
That same year she founded the Vascular Birthmark Foundation. It seeks to help educate parents about the signs of vascular birthmarks, treatment options for them, and the latest research on the condition. The Foundation also helps to provide funding for patients who need surgery.
Rozell-Shannon remembers how scared she was for her daughter Christine, when she was looking for the best research and treatment options for the girl and found very few.
With the Foundation, she wants to help ease that process for parents across the country.
“Every week I monitor 15 different Facebook pages related to vascular birthmarks,” Rozell-Shannon said.
Within the pages of worried parents, she answers parents’ questions on vascular birthmarks and helps to connect them with doctors in their area and across the globe who would be able to treat their children.
“One in ten children are born with a vascular birthmark, or 400,000, each year in the United States (based on the 2003 census). Of these infants, 1 in 10, or 40,000 are born with a vascular birthmark that will require the opinion of a medical specialist,” reads the Foundation’s website.
The 100,000th patient, who was treated Dec. 7, was Brianna Brewer, a 3-year-old from Ohio.
Brianna had a vascular birthmark on her upper lip that was so large it impacted the development of her teeth and impaired her speech. Rozell-Shannon connected with the family through a Facebook page and led them to the Nicklaus Children’s Hospital in Miami, Florida, where Brianna was treated.
“This family’s journey is typical of many we have helped over the past 22 years. Despite the fact that early intervention could prevent complications, many patients postpone treatment based on physician recommendations to ‘wait and see.’ I am ecstatic that Brianna has received the life-changing surgery she needed with the help of one of VFB’s expert surgeons,” Rozell-Shannon said.
When Rozell-Shannon began the Foundation 22 years ago, she had no idea it would grow to reach 100,000 patients.
“Today, over 25 percent of individuals with a vascular birthmark are misdiagnosed. That’s not acceptable,” Rozell-Shannon said.
With that in mind, she’s added another goal for the foundation and is trying to raise one dollar for each patient that the Foundation has helped to receive treatment.
For more information on the Foundation, or to donate, visit: birthmark.org or send mail to The Vascular Birthmarks Foundation, PO Box 106, Latham, NY 12110.