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 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.
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!
Our daughter was born with Port Wine Stains covering half of her face and back. With little knowledge of what Port Wine Stains were, we never expected a birthmark would present with so many health concerns. She was also diagnosed with Sturge-Weber Type II. My goal is to educate those around Rockford, Illinois area, as well as to provide support to parents and families also experiencing similar situation. See more about our story at https://youtu.be/CQOy3TWwfSQ
My first-born child developed a mixed hemangioma on his upper lip and hand as well, both appearing during the second week of his life, that grew so fast and so big that not only became life-threatening (the facial hemangioma blocking my baby’s nostrils and causing respiratory problems) but also destroyed permanently the skin’s texture and the appearance of the affected areas. Fortunately, during this difficult period, we have been blessed to have met the most gifted, motivated and giving doctor of all, Mr Stavros Tombris, who took in charge of our son’s health and gave us hope. Ten years and several operations after, we are still on this journey together.
My name is Dorothea but I have gone by my middle name “Nikki” my entire life. I am 47 years old and I was born with a port wine stain and have undergone argon laser treatment several times starting when I was around 14 years old for a few years. In my mid 40’s I notice my face started to look larger then the non birthmark side so I went back to the dermatologist here in my city and for the first time had tests done and found that my birthmark is very deep and goes all the way into my chest cavity and this is why after all the laser treatments I received I never saw much change. I know this is how I was made and I accept it, I may look a little different but I always try to be kind, friendly to everyone and sometimes I even forget I have a birthmark. My friends and family tell me they don’t even see it anymore. I have been married to my husband for 26 years and we have 4 beautiful children.
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.