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.
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!
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.
I’m a 38 year old daughter, wife and mother to 2 young men. I run my own successful business with my husband. I’ve been fortunate to be blessed by my Grandad (God bless his soul) who allowed me to have approximately 12 operations from the age of 8 until 23. My family finally said, “You are who you are, with or without your birthmark. DONT CHANGE.” Over the past 10 years I’ve learned to love and respect and embrace the person I am. I no longer feel the need to hide or cover my birthmark, as it makes me, ME!!!! Blessings and strength to all that are going through a tough time. Just know those tough times won’t last and neither will your insecurities. ❤❤❤
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.
I have a PWS on both sides of my face, my neck, my right arm and right chest. There have been times I’ve hated my PWS and I’ve been very depressed over having it; usually when I get the inevitable, “what’s wrong with your face?” comment. I wore make up to cover it as a teen. Now I just don’t care, I am who I am, and I live by the phrase, “the people who matter don’t mind and the people who mind don’t matter.” I started treatments at 6 years old with just topical numbing cream. I had to stop for a while because my PWS is large and treatment was too painful. When I was 9 years old, we found a doctor who treated children under general anesthesia, it made treatment so much easier. I now work as a dermatology nurse and get be a part of other people’s treatment journeys, which I absolutely love!
My name is Elizabeth, and my daughter, Hanalay, was born with a port wine stain in 2016. I’d never heard of vascular birthmarks prior to her diagnosis, but we’ve learned a lot since then! We’re eager to share our experiences to help ease the road ahead for others facing similar situations. So far, Hanalay has undergone 13 laser treatments on her birthmark under anesthesia. Otherwise, she is a happy, healthy two-year-old who loves meeting new people, playing dress up, and eating ice cream! We try to keep track of our birthmark-related adventures in a blog as well. Feel free to check it out at: https://birthmarkstogether.wordpress.com/