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.
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.
First time mom never knew or heard of vascual birthmarks until she was born. Already scared enough of the delivery process had to to have a c section then having my daughter be deliverd and not being able to see her for more than 10 seconds, as they took her down to NICU for what they said was some sort of a possible rash. it was all very scary amd emotional and i would love to help out other new moms and eveeyone else out there that doent know what a vascular bm is!
I’m 21, and live in North Wales. I was born with the Portwine Stain on the left side of my body. Since I was a baby I have had numerous of laser therapy sessions in Alder Hey Children Hospital in Liverpool which helped to fade out the birthmark until I was 18, then I was transferred to Whiston Hospital in Prescot, and then to St Helens Hospital which I now attend every three months. I’m happy with the progress, even though I know the Portwine Stain will never dissapear.
My name is Gabrielle, or “Gabby”. I have an untreated port wine stain covering my right arm and hand. I’m also a sucker for humor, so my favorite thing about my PWS has to be the irony of it. I’ll go days at a time without even thinking about my birthmark. I’ll notice it on my hand when I reach for something, and it’s completely casual. When I describe myself, my birthmark doesn’t come to mind. But there isn’t a day that goes by where others don’t notice it. When others describe me, it’s probably the first thing that comes to mind. I mean, they don’t call me “the girl with the thing on her arm” because I have a great smile.
How funny is that? What makes me stand out to others doesn’t stand out to me, and that is why VBF is important to me. I want to raise awareness and help support other children and teens living with a vascular birthmark, because I hope that one day my birthmark isn’t ironic. Of course, then I’ll have to find a new favorite thing about my port wine stain.
I’m 16 and was born with a port wine stain that covers the majority of my right leg, and also my upper and lower back. Dr. Roy Geronemus performed my laser surgery, which began when I was three weeks old and continued until I was four. Once after treatment, teachers thought my bruising was perhaps a contagious disease, and they isolated me from the other children. When I reached junior high, I was bullied over my birthmark and realized that not everyone sees my appearance the way my parents see it: beautiful. My passion for dance has placed me in numerous situations where I have to explain my condition. When people stare, I can smile back and inform them about my birthmark and the symptoms related to it. I want to be able to spread awareness so we can stop the stares and help kids feel comfortable in their skin.
My name is Rachel Hudson and my 6 year old daughter Hadlee was born with a Port Wine Stain on her left eye and forehead. Hadlee had her 5th laser treatment at the 2018 VBF conference in NYC and has had amazing results. We were misinformed about birthmarks when she was born and found VBF through research. When Hadlee was born, we were told her Birthmark would disappear and not to worry. The VBF informed us bout treatments and the chance of developing SEO. Hadlee received ultrasounds and sees an ophthalmologist regularly to be sure she is in good health. The VBF is such a huge part in Hadlee’s health and confidence. Hadlee already knows enough to explain what a PWS is and why she needs treatments. She loves animals, reading, school, and making new friends. We are so grateful for the VBF and everything they do for us.
I was diagnosed with blue rubber bleb nevus syndrome at 18 months old. Since, I have a right parieto-occipital AVM that bled before I was born. I also have 3 venous malformations on my left leg and toes. 2 paraspinal muscle lesions and a lesion on my right retina.
Miranda’ is a 15 year old beautiful girl that was born with malformations and red stains, she’s been bullyed in school or everywhere she goes but she’s very strong and loves school she will love to help to help other doctors to understand her condition and find a cure.
My name is Jayden Torres I’m 11 years old and I was born with SWS and my port wine stain at 6 months I was diagnosed with glaucoma I received an implant to control my pressure of my right eye and at 7 months my epileptic attacks started and then I got Hemangioma in my nose. Thanks to Dr. Linda I met my angel the Dr. Geronemus from Laser &Skin Surgery.
My quite large port wine stain over my right shoulder, has followed me all the way from Indiana to New York and many places between. My background is in fashion and fitness, I was a “clothes hanger” for over 10 years. Half of the people I worked with probably have no idea I have this large birthmark as I’ve mastered the art of covering it. I have gone through excruciating laser treatments and tried all of the creams. Standing in heels and awkward hair flips to cover my shoulder left me with some serious back pain. I found pilates. I’m now a clothes hanger and also a certified mat pilates instructor. This helped me deal with my back pain and my “road rash” arm as an ex boyfriend lovingly coined my port wine stain.
I’m 30. I’m ready to help others not have to master that horrible art.
How can I help?