VBF Global Ambassadors are a global network of advocates who are working together with VBF to build awareness of vascular birthmarks and funnel support to every corner of the birthmarks community. In most cases, these are not medical professionals. However, many are either themselves an adult who has or had a vascular birthmark or who has a loved one with a vascular birthmark. In the directory below, you’ll learn more about their personal story.
If you or someone in your family has a birthmark and you’d like to speak with others who have had a similar experience, the Global Ambassadors can also help you identify a Parent or Adult Reps who has volunteered to provide personal support to other patients and families based on their own unique experiences.
To become a VBF Global Ambassador follow this link to register now or contact Scott Cupples, manager of the VBF Global Ambassador Program.
Hey! I’m a 35 year old Police Sergeant, husband, and father to two wonderful children. I’ve had a port wine stain on the left side of my face/neck/lip my whole life. Growing up, I went through the all of the normal awkwardness of being a kid, with the added pressures of looking different. Although I didn’t realize it then, the adversities I faced made me a stronger person. Today, I get to enjoy my life and family as a guy who can face just about anything. However, my confidence didn’t come easy, and I wish I had someone in a similar circumstance to lean on as a kid. For this reason, I’m happy to be an ambassador, to share experiences and help young kids with birthmarks in any way I can!
My daughter London and I have joined the Ambassador program together and here is her story! My name is London and I am 9 years old. I was born with a hemangioma directly underneath and to the corner of my right eye. The placement and the speed in which it was growing, encouraged my Dr and parents to start propranolol and later laser treatments. After 7 laser surgeries the hemangioma is gone. A scar remains and it does not bother me. It reminds me of my amazing story every day. I love it. My Mom, Casey, also was born with a strawberry hemangioma on the top of her head. It is gone now and they did not have to do any surgeries to have it removed. I spread awareness at my school with the Buddy Booby Book, wear your mark/heart day, as well as sharing my stories with everybody I can. I’d love to become an ambassador and help other kids like me get through a difficult time with their hemangioma or ot
My daughter, Reagan, was diagnosed with a large, compound, segmental hemangioma of the scalp with a portion abutting the spinal dura at 1 month old. After being thoroughly tested for and cleared of PHACES Syndrome, she has taken Propranolol for 13 months. We experienced several ulcerations, full sedation for MRI/MRA, a cardiac consult and testing, a neurosurgeon consult, and over a dozen dermatology consults. Her hemangioma is now in involution, and we are beginning to wean from Propranolol and look forward to the next stage of our journey – helping others advocate for their children and care for all children with vascular birthmarks.
I’ve had a large birthmark on my left leg since I was born in ’93, but I wasn’t diagnosed with KT Syndrome until 2012, when my pain started. Since then I discovered the VBF, which has been instrumental in getting me help with experts on my condition. As a global ambassador, I hope to get that same help to others in the Vascular Birthmark community that may not be aware of the VBF, and would greatly benefit from their resources, as I and many others have.
I have lived my entire life with an untreated port wine stain vascular birthmark that covers most of my left arm and shoulder. When I was younger, I struggled with the insecurity that comes with being “different” than most. However, I have come to embrace who I am and I am looking forward to helping others who can relate to my situation. I am an active duty officer in the US Navy, currently stationed in Omaha, Nebraska.
Mother of a beautiful girl with a PWS on her left side of the face. At the beginning of our journey nobody knew what was on her face, we went to so many medical examinations with no luck. Thanks to VBF and support groups on Facebook, we found Dr. Linda and learned everything about our birthmark, and now we are seeing Dr. Geronemus in New York and finally we are satisfied that we are doing the best for our child. As a parent who did not know that PWS exist, we are very grateful and it is very important for us to share awareness.
Martin was born with faint, pink marks that we were told were due to birth and would fade. They didn’t fade; they got brighter and darker and became raised, it covered his back, half of his chest, full arm and side of his head. He was misdiagnosed and when his skin started to open with sores we took him to the ER where many tests were done and in a couple of days was diagnosed with PHACE Syndrome. He was two months old, we were terrified, something we were told would not be any harm was actually internally affecting him and was potentially life threatening as they were unsure he was getting enough blood supply with the narrowing of his arteries. He started taking propranolol to fade the hemangioma and we became experts at bandaging our months old baby so his sores would close and not become infected. His few physical delays didn’t stop him as he is now a four-nado who loves to run, play and sing. He is no longer on propranolol but is on a daily aspirin as a blood thinner for his narrowed arteries and he is still at risk of stroke. He will continue to have many annual tests done and our journey continues as he starts school this year. We are truly blessed to have him and we adore his beautiful PHACE and soul.
I was born with a port wine stain that covered most the left side of my face. My mother took me to doctor after doctor, but there was no viable treatment. So I grew up with a big purple mark on my face, and it was not easy. As I got older we tried using makeup, but Covermark was the only thing we could find, and it was thick and plastic, and took a long time to apply. By the time I got to college I had discovered a theatrical makeup, Panstick, with which I could create a mask to hide behind. For the first time, people who met me, saw a normal, if heavily made up face. I was nearly 40 years old when the first lasers were approved for experimentation. The ruby laser faded the birthmark, but it left scars. Today I am a grandmother, and after more than 35 treatments, my birthmark is light enough to be covered with ordinary treatments. Many days, I feel comfortable enough to wear no makeup at all. I published e a memoir of living with a birthmark, Marked for Life, which is available on Amazon.
I live in Umbria, Italy, and would be happy to share what I have learned with others. Sono in grado di aiutarvi anche in Italiano.
My name is Alana Dolcemascolo. I have a venous vascular malformation on my right arm. I had 17 sclerotherapy treatments with Dr. Robert Rosen in NYC. Also I volunteered at 2 of the VBF conferences in NYC. At the age of 6 I had my first surgery at Lenox Hill Hospital.
A small red mark appeared on my daughter’s forehead at approximately 2 weeks of age. It got bigger, more red, and bumpy in texture within a few weeks, which was terrifying as new parents. People would stare, comment, and look concerned as we passed them. We did our own research and saw our pediatrician who confirmed it was a hemangioma. With being hesitant about medications, we chose not to medicate at that time and continue to track it with the pediatrician and dermatologist. Her hemangioma stopped growing when she was about 12 months old, and has since been fading. At 18 months we decided to try topical Timolol medication, and at 22 months decided to start oral Propranolol as well; both to see if the process could be expedited. We love Nora no matter what and we are so glad to be an advocate for her and others that make birthmarks beautiful!!