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.
My daughter Kennedy was born with Kaposiform Hemangioendothelioma, KHE with Kasabach Merritt syndrome in 2014. She was diagnosed correctly at a month old and spent many months in the hospital on steroids and chemotherapy (vincristine). After endless little tweaks to her treatment, she was finally stabilized and able to go home. She suffered with extremely low platelet counts and internal hemorrhaging until she was stabilized. Currently she is thriving with little to no medical intervention as we call her KHE dormant. We are well aware of its ability to awaken which would require her to start treatment again. We have documented her story on Facebook at Kennedy Dailey And The Search For A Cure To KHE.
Hi my name is Chad, I’m 21 and I was born with a port wine stain on the right hand side of my face going up to the top of my head. Up until the age of 6 I had 12 laser surgery’s to reduce the redness/brake up my birthmark. Throughout my childhood I never had any problems because of my birthmark, or if I did they were small that I can’t remember them. I normally forget I have a birthmark unless it catch it in the mirror or someone looks. I don’t have a problem people asking me questions about my birthmark, I’d rather them ask then just stare. You should never be afraid of what people think or say about it, it only matters what you fell inside. I personally don’t think is has held me back, in some ways I think it has helped.
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!
On January 17th, 1992 a little one was born. She was welcomed with love by her family who has always embraced her little “angel kiss”. Growing up with a facial difference in my younger years was quite tough. Not knowing anyone like me and being singled out for being different was the norm. I began covering up and hiding behind caked on layers of make up at the age of eight. I spent eighteen years behind that mask before finally becoming at peace and finding love for my birthmark. Being our truest self and embracing our differences is the most freeing feeling of all.
Fate May have dealt us a different tale, but it’s also a great motivator to conquer. If I let the stares/whispers stop me, I’d never be the inspiration that drives me on those dark days!
My daughter Bailie is 9 years old. She was born with a port-wine stain on the right side of her face, extending to her neck, ear, and scalp. She has had 19 laser treatments at Shriner’s Hospital in Galveston, Texas.
My daughter Abby was born with a PWS. She has had many laser treatments and it has helped a lot. The treatments were being done in Nova Scotia but now we have to travel to New Brunswick for her to be sedated. She knows and lives her PWS….it makes her different…it makes her special. I tell her its where the Angels kissed her.
My name is Dakota, and I’ve been getting laser treatments since I was 11 months old until now! At 28 I have had countless laser treatments and am so thankful for every one of them. Life with a port wine stain has been eye opening, strengthening. I truly believe I am a better person for being born with my port-wine stain. I would love to help other people even if it’s just a conversation about what they are going through and have recently created a Give2MyVBF page!
I have been getting laser treatments since I was 11 months old until now! At 28 I have had countless laser treatments, and am so thankful for every one of them. Life with a port wine stain has been eye opening, and strengthening. I truly believe I am a better person for having being born sith my stain. I would love to help other people even if it’s just a conversation about what they are going through.
