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
My son Jackson was born with a port wine stain. His doctors all assured us that the likelihood of him having Sturge-Weber Syndrome was very rare due to the size of the port wine stain. He was diagnosed at 4 months after a cluster of seizures. I now know that size of a port wine stain has nothing to do with brain involvement.
I would like to become an ambassador to help spread awareness and education about PWS, as well as Sturge Weber Syndrome.
My name is Brenna, and I am 22 years old. I have a Port Wine Stain that covers a large portion of the right side of my face. So far, I have had 10 laser treatments on my birthmark and only get them as needed. It took me a long time to accept myself and my birthmark but now, I am so confident and couldn’t imagine myself without it. Of course, not everything has been easy as a result, but that’s just pushed me to do and try harder. My birthmark does not define me, but it sure has helped me become who I am today!
I am 25 years old and was born with a port wine stain birthmark. I was always supported by my family and friends growing up but strangers were less kind. Middle school and high school was tough. After graduating I really found myself and the beauty in my birthmark and started to really embrace it . Some days I cover it with makeup still, but now when I do it’s no longer because I don’t like it . I know with or without that makeup I am so beautiful and blessed .
To all the little girls and boys growing up with one now , I know kids are mean . But you are so much more special and beautiful and unique because of it and God gave it to you because he knew you were strong enough to handle all that life will throw at you ❤️
My daughter Kennedy was born in 2014 with Kaposiform Hemangioendothelioma, KHE with Kasabach-Merritt syndrome. She was diagnosed correctly at a month old and spent many months in the hospital on steroids and chemotherapy (vincristine). After endless 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.
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.
This is my precious daughter Amayah posing with her book God Made Me Perfect: Amayah’s Amazing Birthmark, and her pediatrician, Dr. McGehee. Amayah was born with a port wine stain on the right side of her face. Before we were about to start treatments in New Orleans, the covid-19 pandemic hit, which bought our plans to a halt. During that time, we decided that Amayah can make her own decisions regarding her birthmark when she gets older and we tell strive to teach and show her the beauty that she possesses!
I have a Port Wine stain on my chin, lip and cheek. I started laser treatments very young but stopped after I didn’t see changes to the size or color. However, Technology has improved and I am back at it! I had my second laser treatment this year, and I am seeing improvements! I had two “debulking” surgeries on my lip to decrease the size and create symmetry.
I have been making paintings of people with birthmarks which you can see on my Instagram page, @portwinestainpaintings! I am really happy to connect with people with birthmarks! Send me a DM if you want to chat. <3
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.