The Vascular Birthmarks Foundation
Dr. Linda Rozell-Shannon, PhD President and Founder
Dr. Linda Rozell-Shannon, PhD President and Founder
The Global Ambassadors are a network of advocates for the Vascular Birthmarks Foundation who work together to raise awareness about vascular birthmarks, anomalies, and related syndromes all while cultivating a supportive community. We are organized into five fundamental committees, which are led by members of the VBF Global Ambassador Council. Our council is composed of the most active advocates within the Global Ambassador program who donate extra commitment time towards maintaining program engagement. Each committee initiative serves the purpose of expanding our reach together to those within our birthmark community as well as to those unaffected. Our committees consist of Regional & Virtual Meet Ups, Awareness, Fundraising, Ask/Accept Anti-Bullying, and the Parent Advocacy Network. The Global Ambassador Program demonstrates VBF’s incredible mission, provides helpful resources to our network, and highlights Dr. Linda Rozell-Shannon’s vision through each step of the way.
Regional and Virtual Meet Ups organizes, facilitates, and encourages members of the VBF Global Ambassador community to connect through channels beyond social media such as Zoom meetings or in person local meet ups.
Fundraising helps our community raise funds for VBF through online and in person events which goes towards our mission of networking those affected by a vascular birthmark, anomaly or related syndrome (VBARS) to the appropriate medical professionals for evaluation and possible treatment.
Awareness is designed to help educate, spread VBF resources as well as expand the VBF Global Ambassador program by connecting Ambassadors with areas of interest in the Vascular Birthmarks Foundation network.
Ask/Accept Anti-Bullying promotes a ‘Bully-Free’ zone and will raise awareness in regards to handling bullying, acceptance and provide support within the community.
Parent Advocacy Network is a safe space created to help navigate the journey for parents and families with children affected by VBARS.
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
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
My daughter, Etta Rose was born in 2021 with a Port Wine Stain birthmark on her face. When she was born, we were told that she had bruising on her face from delivery. My husband and I knew that something more was happening and the on call pediatrician confirmed our suspicions. Since then, we have been to countless ophthalmology, neurology, and dermatology appointments. We have yet to start laser treatments, but will be starting later next month. Our goal for Etta Rose is healthy skin and confidence in addition to feeling loved, empowered and unique. We also want to be able to effectively educate those who are unaware of VBARS. This community has given us so much knowledge already and we want to continue learning and connecting with this community and beyond!
“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.
