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 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:
Miranda’ is a 15 year old beautiful girl that was born with malformations and red stains, she’s been bullyed in school or everywhere she goes but she’s very strong and loves school she will love to help to help other doctors to understand her condition and find a cure.
My name is Jayden Torres I’m 11 years old and I was born with SWS and my port wine stain at 6 months I was diagnosed with glaucoma I received an implant to control my pressure of my right eye and at 7 months my epileptic attacks started and then I got Hemangioma in my nose. Thanks to Dr. Linda I met my angel the Dr. Geronemus from Laser &Skin Surgery.
My quite large port wine stain over my right shoulder, has followed me all the way from Indiana to New York and many places between. My background is in fashion and fitness, I was a “clothes hanger” for over 10 years. Half of the people I worked with probably have no idea I have this large birthmark as I’ve mastered the art of covering it. I have gone through excruciating laser treatments and tried all of the creams. Standing in heels and awkward hair flips to cover my shoulder left me with some serious back pain. I found pilates. I’m now a clothes hanger and also a certified mat pilates instructor. This helped me deal with my back pain and my “road rash” arm as an ex boyfriend lovingly coined my port wine stain.
I’m 30. I’m ready to help others not have to master that horrible art.
How can I help?
I have grown up with a PWS and want to help spread awareness online and help others with PWS and other birthmarks to accept their “marks of awesome”. I have been promoting PWS on my Instagram and have been featured on BBC Instagram about my birthmark.
A little about my daughter Alice – she is the youngest ‘twincess’. They were born at 37 weeks, she weighed 5 pounds 4 ounces, and her hemangioma came up as a little scratch at two weeks old. Alice was diagnosed with a Hemangioma on her right eye lid when she was 3 weeks old. She falls in the 10% of having to see medical specialists. We are planning a Car Show charity event in honor of Alice for VBF.
My sons name is Onyx and he was born with Klippel Trenaunay syndrome. When he was born, I realized he had a port wine stain and it didn’t concern me, but little did I know the complications that can bring. It took a few months for him to be diagnosed, as we are from a small city in Canada.
At first, we really took it hard. We knew nothing about the condition, or anyone who has had it, since it’s so rare. Social media has been such a blessing to us. We have befriended and spoke with multiple people and parents of children with KTS. Seeing how their children are thriving, even through the ups and downs of treatment, gave us hope for our sons future. Social media gave us a community of people that give us support, advice and friendship and we are so thankful. We strive to bring more awareness to KTS, in the hope that it will become more well known. Hoping in the future, there will be increased treatments, more educated doctors and one day, a cure.
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 deal with multiple venous malformations in both my legs and even in my hand. The one in my knee causes constant tendonitis so I understand when kids have chronic, hidden pain that flares up. I also have the genetic PTEN Hamartoma Syndrome which likely caused my VMs.
Every year I support VBF’s mission by donating my birthday money and the #PutOnYourBirthmark campaign to help raise awareness. I hope one day to become VBF’s teen advocate.
I deal with multiple venous malformations in both my legs and even in my hand. The one in my knee causes constant tendonitis so I understand when kids have chronic, hidden pain that flares up. I also have the genetic PTEN Hamartoma Syndrome which likely caused my VMs.
Every year I support VBF’s mission by donating my birthday money and the #PutOnYourBirthmark campaign to help raise awareness. I hope one day to become VBF’s teen advocate.
I have a PWS that covers up about half of my legs. I started laser when I was 16, and again in my 30s. I realized I am this way and I should learn to come to terms with it. I work on coming to terms with it every day.
