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. 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:
Our family welcomed our sweet daughter, Reagan, into the world in September 2014. From this moment on, The Sheehan Family has immersed themselves into the birthmark community. Having attended the annual VBF conferences, participating in online Facebook chats, managing the network of providers in the Chicagoland area and hosting numerous fundraisers to support VBF. The Sheehan’s dedicate themselves to supporting all families who have children with a Vascular Birthmark.
My name is Leah and I have a 15 month old son called Harry. When he was born there was no sign of any birth mark but when he was around 4 weeks old a little red spot appeared and after that it’s just grew rapidly into the infantile hemangioma.
We are awaiting treatment to start Propranolol and hoping for success.
My name is Lenka, I was born in Czech Republic in 1984 with PWS on my right side of my face. Growing up I faced bullies, but I became confident women and I would like to inspire others. I am ready to run a Czech Facebook page for adults as we only have only pages for children and parents. I would like to bring more awareness here in Czech Republic and I am ready to help people with the similar problems in any way all over the world.
My daughter London and I have joined the Ambassador program together and here is her story! My name is London and I am 9 years old. I was born with a hemangioma directly underneath and to the corner of my right eye. The placement and the speed in which it was growing, encouraged my Dr and parents to start propranolol and later laser treatments. After 7 laser surgeries the hemangioma is gone. A scar remains and it does not bother me. It reminds me of my amazing story every day. I love it. My Mom, Casey, also was born with a strawberry hemangioma on the top of her head. It is gone now and they did not have to do any surgeries to have it removed. I spread awareness at my school with the Buddy Booby Book, wear your mark/heart day, as well as sharing my stories with everybody I can. I’d love to become an ambassador and help other kids like me get through a difficult time with their hemangioma or ot
My Daughter was correctly diagnosed with a VM at the age of 10. It is intramuscular as well in fatty tissue. She has had sclerotherapy twice so far. The blood clots that she has from her VM are very painful especially from puberty and extraneous exercise. Her VM is located on her gluteus and is almost covering the whole right side of her buttocks. It’s very lumpy and hot to the touch all the time. She has a hard time dealing with the stares that other people give her, even though it is covered in clothing. It’s hard as a mother to see my child worry about what people say and the stares, it’s even harder to know that she is constantly in pain and I can’t do anything to help ( she hates taking pain killers, so she just deals with the pain).
Hello, my name is Louanne. My life changed for the better 4 years ago when I gave birth to a beautiful baby girl who happened to have a birthmark on her cheek and chin. It’s been quite the learning experience throughout but I’ve since learned how to be a good advocate for my child. It’s also given me the power to help others who may be experiencing similar challenges associated with birthmarks; choosing the proper laser treatment, finding ressources, finding knowledgeable doctors, anesthesia concerns, self esteem concerns, addressing curious sometimes insentive people and the list goes on. With the help of the foundation I’ve become very comfortable with the decisions we’ve made for our daughter. If I can help you in any way, please feel free to contact me. I’d be happy to answer your questions to the best of my knowledge in English or en francais!
My name is Luis Casanova, and I am vascular Surgeon in Guayaquil, Ecuador. My wife has a AVM in the mouth. I have information that can help.
In 2016, my first-born child, Florence, was born with a facial V2 port wine stain. Like others, my wife and I were left bewildered as to what steps to take next. We sought out the VBF who provided us with guidance on treatment and opened a global support community to us. We have since completed 12 treatments. Grateful for the support we were given, I set about organizing a fundraising and awareness campaign for the VBF in which I completed Norway’s toughest mountain race, raising $4,000.
Hello! I was born with an AVM in my left foot. As my AVM has been progressively gotten worse, I have just had my first embolization done in August 2019 and soon to have another. Living with AVM comes with a lot of struggles but we can get through this and spread awareness!