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 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.
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!
I was born with a port wine stain covering the right half side of my face. My family tried to find any treatment they could for me, but we were unsuccessful, and the lesion was getting worse and worse every day. At age 28 my face became horribly disfigured and was still left untreated, until I miraculously found Doctor Milton Waner who saved my face and changed my whole life.
Lola was born with a quiet visable Kasposiform hemagioendothelioma with Kasabach merritt. Sadly this was misdiagnoised twice as a hemangioma & and vascular malformation. She is under sheffield childrens hospital & great ormand street. Currently on no treatment but treated kms with steriods & 23 doses of vincristine. We have lola facebook group, which we help support & try get advice for people all over the world to help. Also just offering support.
My name endah of Indonesia. 35 years I received the condition of the with PWS. First, when small I just received a scorn from the shelter me. Just support my father and my mother, as well as a large family I made my able to stand up until today. I am proud and still grateful to God with PWS it because I think not everyone can be like me. This is a gift of of God. To prove I could and able to be more of them all the perfect, I choose the determination migrated to the capital. Here I found the back of the people who think up and accept all advantages and lack of me. And I could share of with pupils me. Being a teacher is the choice of my life.
My name is Eric, I was born with a PWS. Growing up I faced bullies, depression, fear, and insecurities – but that all changed with time. Once I accepted who I was the rest was history. I used those hard times to become who I am today. Today I use music to help spread my message of strength, love and confidence. I am dedicated to my community by providing school supplies to the youth and winter wear to the homeless. My hand is always out to anyone who needs it! I run a social media page “Port Wine & Proud” supports you!
