The Vascular Birthmarks Foundation
Updates from Dr. Linda - Read More
December 7, 2016
by: Dr. Linda Rozell-Shannon
It goes without saying that every child is special. But for me, every child with a vascular birthmark is extra special. Ever since 1994, when my daughter Christine was diagnosed with a hemangioma, my life has been focused on helping every family affected by a vascular birthmark. That’s why I founded the Vascular Birthmarks Foundation (VBF), to educate affected families and treatment experts about the latest information regarding the diagnosis and treatment of these often complex lesions. No one was there for me in 1994. Because of that, I vowed to God that I would dedicate my life to this cause, so that no parent would be alone on this journey. That was 22 years ago. Today, I am proud to announce that the vow I made in 1994 has resulted in the most amazing event in VBF history.
Every week I monitor 15 different Facebook pages related to vascular birthmarks. In mid November, I saw a post from a mother from Ohio showing a picture of her beautiful 3 year old daughter, Brianna. I immediately noticed that not only was Brianna’s upper lip hemangioma huge, it was pushing her teeth back. I began messaging the Mom and she told me that doctors told her to wait for surgery. She also told me that Brianna had been on propranolol for 18 months, the leading drug used to shrink these lesions. It kept it from growing, but it did not shrink the hemangioma. The doctors referred Brianna to speech classes. She would also need orthodontic work to correct her teeth. The removal of this hemangioma is an outpatient procedure. It baffled me that 22 years after my own similar experience, another mother was facing this same dilemma. What I didn’t realize was that on that very day, in mid November 2016, Brianna wasn’t just extra special. She was double extra special. She would become our 100,000th patient networked into treatment in 22 years. HALLELUIAH!!!!
Working with VBF’s Honorary Chairpersons, former major league baseball player Frank Catalanotto and his wife Barbara, who VBF helped with a similar situation in 1999, we were able to negotiate with one of VBF’s expert surgeons, Dr. Chad Perlyn, of Nicholas Children’s Hospital (formerly Miami Children’s Hospital) to do Brianna’s surgery. I was ecstatic. But, can you imagine how her parents felt when I told them the news? I can, because that was me 22 years ago and that was also 99,999 other families that VBF has helped throughout our 22 year history. We know that we have made a difference in their lives because they tell us. And, we want to continue this life changing work.
Today, VBF is the leading not for profit in the world for families affected by a vascular birthmark. But none of our accomplishments would be possible without the financial support that has been given to us from families like you.
To coincide with reaching 100,000 families helped by VBF, I have set a goal to raise one dollar for every individual that we have networked into treatment since 1994. That means we have a goal of raising $100,000 over the next 12 months.
If you or a loved one has been helped by VBF, we are asking you to remember us by donating to this very important campaign. Donate in “honor or” or “in memory of” that individual that we have helped. You can make your gift by going to birthmark.org/vbfdonate
or send a check to The Vascular Birthmarks Foundation, PO Box 106, Latham, NY 12110.
VBF is embarking on a worldwide physician education plan to insure that everyone diagnosed with a vascular birthmark has access to an accurate diagnosis and appropriate treatment plan. Today, over 25% of individuals with a vascular birthmark are misdiagnosed. That’s not acceptable. Help us to help these children and adults affected by a vascular birthmark.
Thank you and God bless you. I am thankful for my daughter’s hemangioma because it changed my life and it has given me my purpose. As long as I am physically able, I will continue my mission to insure everyone diagnosed with a vascular birthmark receives an accurate diagnosis and an appropriate treatment plan.