The Vascular Birthmarks Foundation
Dr. Linda Rozell-Shannon, PhD President and Founder
Dr. Linda Rozell-Shannon, PhD President and Founder
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.
Scott Cupples
Director, VBF Global Ambassador Program
ambassador@birthmark.org
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.
“What’s that on your face? Is that chocolate on your cheek?” These are questions I have been inundated with throughout my life. I was born with a congenital nevus on my cheek. There were times I was ashamed of my condition, asking myself “why me?” As I grew older, I started asking complex questions about my birthmark that people could not answer. “Could a genetic mutation cause congenital nevi?”
I have always had an interest in science, but it is my experience of having a nevus that fueled my passion for helping others. The doctors who treated me further sparked my passion, converting complex science into a digestible form. Their patience with me never faltered, despite the wave of questions coming their way. My dermatologist told me, “Do not worry about what people say and go make your mark on this world.” It took time for me to accept that my birthmark is what makes me unique. I now understand that outward appearance does not define my self-worth, and inner beauty is what truly matters. My condition allowed me to empathize with patients and introduced me to the wonderful VBF community. I remember attending the VBF conference at Lenox Hill years ago and being so inspired. I want to use my voice to help spread awareness about vascular birthmarks.
Hi there! My name is Arianna Faro and I have Klippel Trenaunay Syndrome. I have been hospitalized more than 130 times due to side effects of Klippel Trenaunay Syndrome. When I was 18, I embarked on a journey to gain awareness (by creating my own blog) so others also struggling would not feel so alone. To this day I still have a blog and use that to garner awareness.
I am extremely passionate about helping others and helping to spread awareness. It is an absolute honor to be a VBF Global Ambassador. I have birthmarks on my left leg and left thigh/buttock. I used to be very shy about showing my birthmarks but now I feel as though they are part of who I am. I was born this way, so there is no need to feel ashamed.
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.
I was born with an AVM, which is an extremely debilitating and disfiguring malformation located in the left side of my face. I have been receiving treatments for this since I was 9 years old and have had 69 surgeries to date with more to come. Through this process I had become disfigured, swollen, and unable to move half of my face. I suffer from chronic bleeds that typically result in blood transfusions, passing out, and emergency surgeries. I was able to gain some of my confidence back through reconstructive surgery. But what really keeps me going is fashion. I started my own clothing brand called Wishlist by Ashley Marion, where I design, pattern, and sew everything. This has been my creative outlet the past few years. Together with VBF, we host annual Fashion Show Fundraisers and put the proceeds towards AVM research.
