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.
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.
My name is Maille McNicholas and I was born with Klippel-Trenaunay Syndrome in 2006. At first, my parents did not know the reason for my birthmark, but thanks to the amazing physicians at the Vascular Anomalies Team at Children’s Hospital of Philadelphia (CHOP), we discovered my diagnosis and treatments that have helped me as I have grown.
I had my first surgery in 2015 with Dr. Srinivasan, who removed a large and painful varicosity from my leg. He then placed numerous coils to hopefully prevent more varicose veins from forming. I have truly been fortunate to have access to such an amazing team of physicians.
Today, I am a National Dance Champion and daring trapeze and aerial performer. I love dancing competitively with my Dance Team and working with the silks and static trapeze. I have also been involved with Pageants for five years, and have made it my platform to support children, like me, with Vascular Birthmarks. My goal is to raise awareness for vascular birthmarks, and serve as an Ambassador for the Vascular Birthmarks Foundation, and show that all children can live their dreams!
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.
Dominic was born prematurely and covered in hundreds of Hemangioma. In the NICU they discovered that he had a ruptered AVM in his brain and was in high output cardiac failure from a hepatic AVM. He is a fighter and has fought from day one.
My son Dominic was born prematurely and covered in hundreds of Hemangioma. In the NICU they discovered that he had a ruptured AVM in his brain and was in high output cardiac failure from a hepatic AVM. He is a fighter and has fought from day one.