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.
My daughter Madeleine was born with a little pink patch on her left upper arm. I did a lot of my own research and found it to be a mixed hemangioma. It started to grow, the red got brighter and more raised, her arm had a bulge and was blue all the way round as if she had been bruised. We finally got a referral from our GP and at 6 months given an appointment to great Ormond street in London. We went for our appointment and started on Propranolol. Madeleine has also always had a patchy right arm. And at the age of 11 months after seeing Dr. Glover now have a diagnosis of a capillary malformation. Along with this she also has a stork bite on the back of her neck and a blood disorder (which isn’t linked to any of her birthmarks). I have spent hours and hours researching vascular birthmarks and feel that in the UK there isn’t enough information available. I want to be able to help spread awareness! I wish I had found someone earlier in our birthmark journey. I feel that people with birthmarks are not always accepted as well as someone without a birthmark, but I do feel this is because many people do not know anything about them. I didn’t, until my daughter was born with one. I want to use my spare time to raise awareness and acceptance for people with all types of vascular birthmarks, and to let people know about VBF and the hard work and support they give to not only the US but also the UK and every other country where people are seeking advice and help. Birthmarks are beautiful! They are not imperfections they are perfections.
I have a large birthmark that makes me stand out and I love that about myself. Growing up I dealt with bullying, insecurity, anger, and depression. I still deal with anxiety when I am in public but the more I accept and learn to love myself, the more it disappears. I did laser treatments when I was younger but realized I was trying to get rid of it to make others feel more comfortable. It has taken time, but I love who I am, and I love my life. I am an active presence on social media to spread awareness of birthmarks and break the stereotypes of beauty. I also work as an accountant, and I am also a former opera singer. I am pursuing my CPA and always pushing myself past my comfort zone. I have PWS but PWS doesn’t own me.
My daughter (Chloe) was born with various venous malformations including a large PWS across her chest and right arm. We’ve done the best we can with our doctors at Primary Children’s Hospital, and Chloe is doing well despite her challenges. After numerous rounds of sclerotherapy, she’s left with microcystic hygromas and other various venous malformations. I’m thrilled to find this foundation and hope to connect with others!
When Lydia was born in 2013, doctors thought the redness on left side of her face was bruising caused because her twin brother had been on top of her during the birthing process. Six weeks later, a pediatric dermatologist officially diagnosed the mark as a port wine stain and her mother Kelly began scouring the internet for information and support. Lydia started treatments at 3 months old and began being monitored for Sturge Weber Syndrome. After discovering the VBF, Kelly created a network of Colorado port wine stain families that meet for play dates and share info. Lydia & Kelly believe awareness of vascular birthmarks leads to greater acceptance and they used an opportunity when a story about Lydia’s first day at preschool after a treatment went viral to connect with others all over the world. They look forward to raising even more awareness through the Ambassador program.
Hi, my name is Kathryn. I have been diagnosed with Cloves Syndrome and I have light port wine stains all over my left arm and right hand. I also have a port wine stain on my lower back. I joined the Ambassadors to help VBF spread awareness!
I have grown up with a PWS and want to help spread awareness online and help others with PWS and other birthmarks to accept their “marks of awesome”. I have been promoting PWS on my Instagram and have been featured on BBC Instagram about my birthmark.
Jaxon was born February 26th and just a week after he was born he was coming home looking back on the pictures there was a small red line in between his eyes. By the 20th of that month the line was bigger and swollen, so I made an appointment with his pediatrician and explained that he had seen this before and it was a compound hemangioma. He had not dealt with many, but he knew of a world-renowned doctor in the Charleston area that specialized in them. So, we immediately got a referral and met with Dr. Hochman, who told us that he would need a medicine and, would be admitted to the hospital to start it. We are here to be a voice for our son and others alike.
I am 43 years old and was born with a PWS. I had my first seizure at 16 months old. My parents were told by our pediatrician to treat me as normal as possible so, that is how I was treated. I did have some assistance in math and reading in grammar school. I graduated from HS in 1993 and have a BA in Elementary English Education and a minor in Religious Studies. I have been working in the disability field for a state agency for almost 17 years. Feel free to ask questions!
I have a PWS on both sides of my face, my neck, my right arm and right chest. There have been times I’ve hated my PWS and I’ve been very depressed over having it; usually when I get the inevitable, “what’s wrong with your face?” comment. I wore make up to cover it as a teen. Now I just don’t care, I am who I am, and I live by the phrase, “the people who matter don’t mind and the people who mind don’t matter.” I started treatments at 6 years old with just topical numbing cream. I had to stop for a while because my PWS is large and treatment was too painful. When I was 9 years old, we found a doctor who treated children under general anesthesia, it made treatment so much easier. I now work as a dermatology nurse and get be a part of other people’s treatment journeys, which I absolutely love!
I am Zainab From Egypt. I was born with a Port Wine Stain birthmark on my face, and with a swollen lower lip. People always thought that maybe my mark was due to an accident or burning, and always asked me why my lip was so big. After telling them that it is a gift from God and he create me like that and I love his creation of me, they changed their minds and concentrated on my personality. My birthmark doesn’t prevent me from doing whatever I want to do, and it makes me a lovely person. Thank you to VBF, for helping me understand my birthmark, I’m really happy to spread the awareness as an Ambassador. VBF gives hope to me to treat my birthmark, without fearing of side effect distortions.
