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 Andrew Jenkins, and I have a port wine stain (Capillary Malformation), on my right cheek. It was looked at regularly until I was nine-years-old, I saw a plastic surgeon at Gloucester Royal Hospital, named Mr. Clive Reid. He intended to do a skin graft on my birthmark but decided against it because of the location, and we decided to put my name forward for laser treatment. In November 1992, I received a letter from a Mr. J M Kenealy from Frenchay Hospital in Bristol, offering me some laser treatment and offering a summary of how it works. I had a test patch done on my left arm and had no adverse reactions, so we decided to go ahead with the treatment.
I have a large birthmark that makes me stand out and I love that about myself. Growing up I dealt with bullying, insecurity, anger, and depression. I still deal with anxiety when I am in public but the more I accept and learn to love myself, the more it disappears. I did laser treatments when I was younger but realized I was trying to get rid of it to make others feel more comfortable. It has taken time, but I love who I am, and I love my life. I am an active presence on social media to spread awareness of birthmarks and break the stereotypes of beauty. I also work as an accountant, and I am also a former opera singer. I am pursuing my CPA and always pushing myself past my comfort zone. I have PWS but PWS doesn’t own me.
Our daughter Savannah is 2 years old and she was born with Port Wine Stains on roughly 80% of her body. At first it was very overwhelming because we didn’t know anything about these types of birthmarks or the other issues that they can cause. Through research online, our specialists and other parents we have been able to gain a better understanding of what Port Wine Stains are and what other things can be associated with them. We are still learning, but are hopeful that we can spread awareness and are here to support other parents.
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!
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
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.
Miranda’ is a 15 year old beautiful girl that was born with malformations and red stains, she’s been bullyed in school or everywhere she goes but she’s very strong and loves school she will love to help to help other doctors to understand her condition and find a cure.
My name is Jayden Torres I’m 11 years old and I was born with SWS and my port wine stain at 6 months I was diagnosed with glaucoma I received an implant to control my pressure of my right eye and at 7 months my epileptic attacks started and then I got Hemangioma in my nose. Thanks to Dr. Linda I met my angel the Dr. Geronemus from Laser &Skin Surgery.
My earliest memories of realizing I had a birthmark stem from growing up in the late 60’s to 70’s on a ranch in the middle of the prairie of South Dakota. I recollect flying to variuos places with my parents and my sister in our small plane to visit various doctors who might be able to help me. I was sent away from a Stanford University doctor with an orange oil to rub on my mark that was going make it lighten and a container of a Linda O’Leary makeup. Told by that doctor, “In twenty years they will have a laser that will be able to treat it.” Low and behold 20 years later I received my first laser surgery on the left side of my face, I have had 76 treatments, 1 Sinus and nose reconstruction with bone grafting and have also lived with glaucoma since I was 14 and had a trabectome that has lasted to this day – I’m almost 50. I’m here to help with answering questions, giving talks and educating those that need assistance. You have a friend in me! – Jodie
12 year old Josh was born in southern China, where his extensive PWS was only recognized as a “large red birthmark”. His affected eye was often swollen shut, and his swollen arm, hand and jaw lost most of their ability to feel pain.
Josh came to Montana to his new family at age 5. He has always been “close but not quite” to diagnoses of SWS, KTS, CLOVES, etc. His parents have learned to focus on symptoms versus diagnosis. He has some crazy rare vascular bone overgrowth that may yet hugely impact his life.
Josh has a huge heart for helping “kids like me”, and wants to train a therapy dog for them. While initially shy with new adults, Josh would love to be an ambassador to other children. His Mom is available to talk to the parents.