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 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.
Hello, I am Daniela. I went all my life trying to receive a proper diagnosis, but recently discovered that I have Klippel Trenaunay Syndrome. It is definitely a constant struggle, but I do my best to manage my condition, day by day.
Hi! I’m Danielle Keasling and my daughter, Violet was born with a PWS on her chin, both cheeks, right eyelid, forehead, and scalp. When she was born we were initially told it was bruising from birth. We we’re lucky to have access to wonderful pediatricians who knew about port-wine stains and could refer us to specialists. Because of the location of her port-wine stain, Violet is at risk for Sturge-Weber as well. We have learned so much thanks to VBF and other families in the birthmark community. We want to pay it forward and be there for anyone who needs support like we did! We love advocating and educating about port-wine stains and Sturge Weber.
My name is Danielle and I was born with an Anterio-Vascular Malformation that runs from my right knee up to my hip. I have been treated by Dr. Robert Rosen out of Lennox Hill Hospital in NYC since I was 15 years old. I have had around 9 surgeries with Dr. Rosen. In addition, because of my AVM, I had degenerative arthritis of the right knee and received a total right knee replacement at 23 years old.
I recently moved to Los Angeles from NYC and I am looking for events, support groups, etc to share my story and relate to others.
In addition, I am certified in Pilates and focus on training clients privately with Chronic Pain, Sports Injury, etc. as this is all something I can highly relate to. www.PilatesByDanielle.com
While my AVM and TKR has caused extreme pain throughout my life, I have become a stronger person because of it. I did not let my pain, swelling, or hospital stays keep me from running a 5k race, hiking with my labradoodle, and practicing/ training pilates every week.
Please reach out as I would love to connect with each and everyone one of you!
