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.
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.
Hello VBF! My name is Patrick Rose. I am 26 years old with a port-wine stain birthmark and SWS. My port wine stain has required 27 laser surgeries, the last one being when I was 12 years old. I was also born with glaucoma and SWS leaving me legally blind in both eyes. I joined this group through recommendation from a friend of mine who some of you may know, Scott Cupples. As a child I was bullied and very self-conscious of my birthmark. At the age of 15 I discovered a passion for fitness and haven’t looked back since. Fitness is what helped me gain the self-confidence to embrace my birthmark. To stand out, to look different from others is a gift. It makes us unique. There are still times where I get self-conscious but I’ve grown to realize, that WE are our own worst critics. Everyone has things that they don’t like about themselves. I am also a bodybuilder, personal trainer and fitness enthusiast in my free time. I encourage all of you to find your passion and embrace it!
Jayden has Sturge W.S with Glaucoma (Baerveldt Shunt) on right eye ,epilepsy and he has already been treated with 3 surgeries for hemangioma. He is 10 years old and we started with laser surgery in New York, NY.
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.
Edie was born with a port wine stain on her lower extremity. In 2008, it was challenging to receive a proper diagnosis and she was consistently misdiagnosed until we found a team of doctors through the Vascular Birthmark Foundation. We are so grateful to be a part of the community at VBF and finally have an international team of experts to treat and monitor her condition. Edie wrote a book titled My Beautiful Birthmark to raise funds for VBF for families to get proper diagnosis for their children. She is also the star of a new short film where her birthmark is exposed and not covered for the first time.
My name is Vanessa and my daughter, Loriana, has a PWS on the right side of her face. Being a first-time mom can be overwhelming on its own, but spending the first sleepless week of my baby’s life researching everything I could about vascular birthmarks made it even more difficult. Thankfully it did not take long to find the VBF and many support groups on Facebook. Every person I communicated with made my PWS journey a little more manageable. While I’m no expert, and still learning more everyday, I would love to give back to the vascular birthmark community in any way I can. I’ve started a Facebook group for families in Ontario and am looking forward to connecting with others in my area.
I grew up in the late 70’s and all 80’s with no treatment options and most doctors not knowing what a vascular birthmark or Sturge-Weber Syndrome was, or how to treat it. I was able to have some laser treatments in the early 90’s to help with the skin lumping and swelling. I had about 10 treatments over a 5 year span. My Sturge-Weber Syndrome also has caused glaucoma in right eye and I suffer from seizures. I’m married now with a son and Sturge-Weber Syndrome was not hereditary. Still going strong!
Hi my name is Stacy and I am 32 years old and lived with port wine stain my entire life. I suffer from earlier morning flare ups and emotional swelling, unaligned spaced out teeth, bad gums on my right side. After entering the adult world I learned to embrace who I am and love the skin that I am in. Kids would make fun of me I’d shy away from the world to avoid anyone noticing that my face was not aligned or swollen on certain days. Today my goal is to reach out to every person who has PWS and tell them how beautiful they are inside and out. Nothing more matters then what is on the inside.
