VBF Global Ambassadors are a global network of advocates who work together with VBF to build awareness of vascular birthmarks and funnel support to every corner of the birthmarks communities. In most cases, these are not medical professionals. Many are 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 stories.
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.
Director, VBF Global Ambassador Program
I have Sturge-Weber Syndrome type 2. I have a facial PWS birthmark and Glaucoma. I also have a shunt for hydrocephalus.
I joined the VBF Global Ambassadors because I wanted to show the world that people with birthmarks are awesome, and we can do anything!
Hello! My name is Alyssa and I have a port-wine stain that covers roughly 75% of my body. It hasn’t always been easy, but I have grown to love my birthmark. I am so glad to finally have a birthmark family that we all can relate so deeply with each other. I have loved getting to know so many in the community, and I intend to promote vascular anomaly awareness to as many as I can.
My name is Amanda Byram. I am from a super small town in middle Georgia. I remember growing up feeling like I was the only person in the world with a port wine stain. It was such a lonely feeling. One day, I decided to search the hashtag #portwinestain on Instagram, and immediately my world got A LOT bigger.
I immediately began reaching out to people, joining groups, and learning to love my birthmark. I have made SO many genuine friendships over the last few years thanks to the various groups and social media in general. I love seeing people with port wine stains “in the wild” (as I like to call it). I always try to approach the people I see to at-least say hi and introduce myself.
I am now married with two beautiful girls. I am doing my best to raise my girls to have confidence in themselves. I started embracing my birthmark years ago and I hope my girls will look up to me one day and know that they are beautiful.
I want to help others love themselves as well. I know how lonely I used to feel so if I can help one person not feel that way, I’m happy. I am so proud to be apart of the birthmark community.
Hi everyone! My name is Amanda, I am 27 year old and I have a facial Port Wine Stain on my left cheek. I underwent laser surgeries at the age of 3, and continued to do so until I was about 13. I decided for myself that I didn’t want to go through the hassle and pain of laser treatment, and wear my birthmark proud now! It was a process of acceptance for me, and have fully embraced it now. I also am the daughter of two deaf parents, and am fortunate to have had them model what it’s like to be unique and different. Additionally, I am a certified ASL interpreter, Have a certification in ADA basics, and have a passion for disability advocacy!
I was born with a facial port wine stain (and Sturge-Weber) all over my face and all over my body. With this I also suffer from Rhynauds disease in my right hand. Since being a baby I have had a lot of Lazer treatment on my face to reduce the redness. At age 12 I started to wear makeup to cover my port wine stain on my face as it gave me confidence issues, but camouflage was so heavy and cakey that I decided to start using “normal” drugstore makeup to help cover the redness. I found a technique and makeup brands which I like so then decided to create a instagram account to help out others who struggle with confidence issues abd help them achieve perfect coverage of their birthmarks.
My 5 year old daughter had PHACE syndrome. I’m anxious to help VBF spread awareness.
When I was born little to nothing was known about PWS. Treatment was non existent. When I was 16 I began my laser journey with the first laser used to treat PWS, and I still have scars. Treatment and knowledge has come so far, and it is so exciting to see the strides being made in research, outreach, and treatment. Today my PWS is just me, it has shaped me to become a caring and empathetic person and guided me into a helping profession.
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.