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 you identify a Parent or Adult Reps who has volunteered to provide personal support to other patients and families based on their own unique experiences.
To become a VBF Global Ambassador follow this link to register now or contact Scott Cupples, manager of the VBF Global Ambassador Program.
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.
When Lydia was born in 2013, doctors thought the redness on left side of her face was bruising caused because her twin brother had been on top of her during the birthing process. Six weeks later, a pediatric dermatologist officially diagnosed the mark as a port wine stain and her mother Kelly began scouring the internet for information and support. Lydia started treatments at 3 months old and began being monitored for Sturge Weber Syndrome. After discovering the VBF, Kelly created a network of Colorado port wine stain families that meet for play dates and share info. Lydia & Kelly believe awareness of vascular birthmarks leads to greater acceptance and they used an opportunity when a story about Lydia’s first day at preschool after a treatment went viral to connect with others all over the world. They look forward to raising even more awareness through the Ambassador program.
I am a certified personal trainer, group fitness and nutrition coach, and I hope to bring awareness to others about living with a birthmark – and help them with the ups and the downs. I’m also a writer in my spare time.
My name is Eugenia, I’m from Argentina and in 1991 I was born with a big hemangioma on my right cheek. At that time there was not enough information about treatments, so I waited until I was 8 years old to have my first surgery. I had three surgeries that helped me a lot. Now I still have the hemangioma but it reduced it size. It would be a pleasure for me to help people who suffer from similar conditions. If you want to contact me and know more about my story is just write me.
Hello, My name is Marianna. On the 6th of May, 2018, I gave birth to my first baby, Angelica Rose. Angelica was born with a Port Wine Stain that spreads across both sides of her face. My experience as a beauty therapist gave me quite an understanding of the skin condition itself. I also noticed she has a stork bite on the back of her head, as well as a Mongolian spot on the back of her head. At the hospital, they made me aware of the medical conditions connected to PWS, as I didn’t have as much knowledge before her birth. So far, Angelica is clear of SWS and Glaucoma, and is due to start laser treatments in July of 2019. My mission is to continue to educate others about vascular birthmarks, the importance of treatment and raising awareness.
My sweet baby girl Claire was born with a port wine stain on her right cheek, eye lid, and scalp….she has had 5 laser treatments in NYC. She is under the care of Dr. Theresa O. She is a vibrant little lady who loves her siblings very very much. She is just 18 months old. We did not continue with testing for other complications as she is hitting every milestone beautiful. I’d love to support other families in my area as well as have them support us. It’s been a long year and half as we fear bullying as she grows up.
I’m Mayondi Jayasundara (29years old) from Sri Lanka. When I was a little child I didn’t have much bad experience with my birthmark. When the time came for me to start college life, I felt so different from my colleagues. Most of the girls had boyfriends, and no one interested in me. Time went on, and after 13 yrs of school life I became a graduate at the University of Colombo as I completed my Masters Degree last year. Very recently, I married a very handsome gentlemen. My parents are always backing me when something bad happened in my life because of my birthmark. One year ago, I did my first surgery to balance my bulky lip due to this birthmark. I’m looking for laser treatments in other counties since laser treatment professionals are not available in Sri Lanka.
Anyhow today I’m a happy woman.