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 find personal support from other patients and families based on their own unique experiences.
Want to learn more about the VBF Global Ambassadors? For any questions or feedback, please please contact:
My 5 year old daughter had PHACE syndrome. I’m anxious to help VBF spread awareness.
My baby was born with a hemangioma in her mouth and nose. When she was a week old she started ulceration. At that moment, we started to look for help. Sadly, we couldn’t find a doctor in our country who could treat her. She took propranolol, atenolol, timolol and she received laser. Nothing worked early on, so we started to look for options on the internet which is where we found Dr Linda. She told us to contact baby face foundation. After a year of waiting, they took us to New York and Dr. Waner and Dr. Warren made the reconstructive surgery for my baby. We found angels in this journey that have changed my baby’s life and we can’t be more thankful for this opportunity to spread awareness!
I was born in Venezuela, I was diagnosed with a hemangioma and was told we should wait until I turned 7 years old because it was supposed to disappear. However, that never happened. So I began treatment very late, and due to inexperienced doctors I almost lost my life when I was 7 years old. After this experience, doctors recommended that my parents to take me out of the country and see vascular anomalies specialists, so we came to Boston. It has been a long process with lots of procedures, but God has been great, and this experience has made me strong. Otherwise, I am a grateful women, I’m a violinist, I speak Spanish, English, Portugués, as well as sign language. I went to Med School for 4 years in my country, I didn’t finish because I move to the US, but at some point I would love to continue studying.
I was born with a lymphatic malformation/hemangioma on my left hip. I had two pretty invasive surgeries as a baby and three more between the ages of 10 and 25. Thankfully, I never really have had many complications over the years. I’m now in my 40’s, have had two children and am an avid runner. I’ve completed over 20 half marathons and a full marathon all with a lymphatic malformation/hemangioma the covers my entire left hip.
My name is Andrew Jenkins, and I have a port wine stain (Capillary Malformation), on my right cheek. It was looked at regularly until I was nine-years-old, I saw a plastic surgeon at Gloucester Royal Hospital, named Mr. Clive Reid. He intended to do a skin graft on my birthmark but decided against it because of the location, and we decided to put my name forward for laser treatment. In November 1992, I received a letter from a Mr. J M Kenealy from Frenchay Hospital in Bristol, offering me some laser treatment and offering a summary of how it works. I had a test patch done on my left arm and had no adverse reactions, so we decided to go ahead with the treatment.
Hello, I’m Angela. I am a 45 year old, proud mom of 3 amazing boys. I own 2 yoga studios and I’m so grateful for the VBF community and all that it stands for. Living with a birthmark on your face is not easy, I feel like I have had a bit of all the “feels” associated with it. I believe there are many gifts that present themselves by having a PWS. Some come in real friendships & support, part of it is being different/unique, and some come as the understanding that some people can be really mean and you don’t want to show up in the world in that way. I’ve only recently looked at the potential of removing my birthmark. In the past, it wasn’t an option, insurance wouldn’t cover it. I love that VBF has given us a choice, some direction and the opportunity to work with the best! I am always available to listen and share, connection is key to all survival. -Namaste
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.
Our daughter Savannah is 2 years old and she was born with Port Wine Stains on roughly 80% of her body. At first it was very overwhelming because we didn’t know anything about these types of birthmarks or the other issues that they can cause. Through research online, our specialists and other parents we have been able to gain a better understanding of what Port Wine Stains are and what other things can be associated with them. We are still learning, but are hopeful that we can spread awareness and are here to support other parents.
Alyssa is a 14 years old from Concord, NC and is not your typical teen. She is a competitive hip hop dancer & middle school cheerleader. She entertains audiences with stand up comedy routines, and impressions of female comedians like Miranda Sings. She is a runway model and loves fashion shows. She has a PWS vascular birthmark on her left arm from fingertips to shoulder, and in several other places on her body. Not only has she been bullied at school because of her birthmarks, she’s been embarrassed by suggestive questions from adults and peers about what her birthmarks could be. To date, photographers have been the most accepting of Alyssa’s image. It’s rewarding when I read the social media messages from other girls her age who are inspired by her tenacity to pursue modeling and acting and the reposts from women who wish they had the courage to put themselves out there like Alyssa has. Alyssa brands herself as a Vascular Birthmark Ambassador, encouraging young girls who also have one to feel empowered to pursue their dreams and show off their birthmark.
My life started with a PWS and 100 questions about it. As a child, I went to the Dermotolgist regularly but there were no answers for my parent back in the early 80s. I never had any time of treatment until I was 24. I had always used makeup to cover it and the. Would go through phases of not caring about the PWS. I started treatment and I did not get results until my 30 treatment. As I turned 35, my PWS started to change and I started growing nodules (huge bumps) on my PWS. I am an educator and I always have children asking me what happened to my face and why I have bumps on it. I was asked to change grade levels because I was scary to the kindergarteners. Now I teach 4th grade. It’s been tough wishing for the answers and not having to go through the pain of laser treatments. I have had so many and each time there is a new type of laser, my doctor recommends me to try it. After the stubborn nodules have not disappeared, I have given up on treatments. I’m almost 50 years old and I’m tired of trying to look like everyone else.