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.
Director, VBF Global Ambassador Program
Evelyn Grace, our 19-month-old daughter was born at 34 weeks due to preeclampsia. She came into this world with a fight and a 17 day stay in the NICU at Overland Park Regional in Overland Park, KS. Evelyn’s doctor was sure it was just brushing from her traumatic birth. A few days later, her father and I were told the news that it was a Port Wine Stain birthmark. We were shocked, as we had never heard of a such thing before that moment. Evelyn was soon tested for Sturge-Weber Syndrome and possibly blindness in her left eye and waiting on the results seemed like forever. Thankfully enough, Evelyn was cleared of any further complications. Days went by, we left the NICU and was referred to a Dermatologist to talk about laser option, this was intimidating. Her Dermatologist recommended 4-6 treatments for her PWS to fade over the next few years. Here we are 5 treatments in and still have little to no fading on Evelyn’s cheek. We get looks, questions and comments while in public, which eat away at me considering Evelyn has no idea what is being said and just can’t help but smile back. We have learned to ignore the comments and just remember how special she truly is. We will continue our journey with treatments.
I have a Port Wine Stain Birthmark on my left cheek, under my nose, on my lip, chin and neck. I underwent 10 years of Pulse Dye Laser Treatments and four years of Versa Plus Laser Treatments – fading some of my marks. My marks loves to change colors depending on my mood or if I’m cold; its my permanent mood ring.
Hello All! Like many of you, I was born with a port-wine stain birthmark on my face and neck – but that does not define me, just as one difference you have from others does not define you. I have worn makeup, had laser surgeries, been mocked and been loved.
When I was born, the doctor told my mother I had Sturge Weber Syndrome, and would not live past the age of three. Well, I am now 26 and plan to use my time in the best ways I can. Wishing you well!
Like so many others, my VM was misdiagnosed as an hemangioma when I was a child and we were encouraged to do nothing because “it would go away”. I sought treatment again as a teen and underwent my first surgery during which a plastic surgeon attempted sclerotherapy and went on later to do laser treatments without much success. My team of doctors encouraged me to stop pursuing treatment because it was too risky and I was “still pretty” despite my malformation.
Roughly ten years later I discovered the VBF and it has totally changed my life. Finally getting answers, finding such a beautiful community, and now beginning treatment with a vascular birthmark professional, I can’t express enough how thankful I am. This organization is saving lives.
I’m Sarah, 31, and live in New York with my three children and husband. I have a PWS covering over 50% of my body. When I was younger I was severely bullied because of my birthmark. While not an easy experience, I used the fuel to ignite my personal journey in speaking out against bullying, as well as being an advocate to others in need. While I did have several laser treatments at a young age when in 8th grade I decided against further treatment and came to fully accept and love myself both inside and out. While I’m currently a stay at home mom with my young children, I dream of doing advocacy work, spreading a message of self-love and body positivity and one day writing a children’s book to address these issues. The first step in my journey is connecting and being a resource for others on a similar journey. I want to give parents and children hope that you can come out of this medical journey with confidence, a strong spirit and appreciation for life.
Hi! My name is Savannah. I was born in Lexington KY in 1986 with a Port Wine Stain Birthmark on the left side of my face. I had an amazing upbringing with unconditional love and support from my family and a select few friends who never looked at or treated me any different from the others.
Early on in school I was mocked and ridiculed for having a PWS. It made it hard to maintain my mental happiness. I remember as early as age 3 strangers asking me if I had been beaten or if I had a rash. It crushed me every time. I had my first surgery at 2.
The doctor used the laser and had it set way to high for me. He burned my temple which cause pain and humiliation for many years and I ended up have plastic surgery at age 4 to correct the damage he had caused. I have struggled mentally with having a birthmark my whole life until I turned 30 when I realized I AM beautiful inside and out!
I am Scott Cupples, Global Ambassador Program Manager. I have lived my entire life with an untreated Port Wine Stain vascular birthmark until starting treatments in 2018 (thanks to VBF). Of course there have been times where my birthmark has made me feel insecure, but I’ve always had the mentality that it will never keep me from accomplishing what I want in life. In addition to my role at VBF, I work in corporate finance and serve in the Air National Guard as a Senior Master Sergeant. My goal with VBF is to help as many families as possible who are affected by vascular birthmarks, and to continuously spread awareness.
My 16 year old son DeVion was born with Klippel Trenaunay Syndrome to his upper body. His younger years were full of constant hospitalizatikns and surgeries, amputations, blood transfusions, ect. We have been blessed in the past with help through the VBF and have continuously helped others as well in our journey!
My son Michael has a Port Wine Stain birthmark. He has received many laser treatments since he was 3 months old. I would like to help spread as much awareness about it as I can, which will eventually lead to more acceptance. When I speak about my son and his birthmark it is somewhat like therapy for me. It has been very emotional. I want to help anyone going through the same feelings as I am. I made a personalized book all about Michael and read it to his classmates before a laser surgery. It has been so helpful. Please contact me and I would love to share it with you!