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 granddaughter (who calls me Mom) was diagnosed with KTS at birth. This was changed to CMTC (Cutis Marmorata Telangiectatica Congenita) at 18 months. She later had Proteus added to the list of her conditions and was diagnosed most recently at the age of 11 with CLOVES. When she was born I returned to school to earn my nursing degree and am currently her private-duty nurse. As a registered nurse, I’ve had the opportunity to assist parents/patients with the understanding and interpretation of medical terminology regarding their individual case. As the president of the Global CMTC-OVM US Organization, I have shared in the connection of bringing patients and their families together with experienced physicians in their search for answers. We believe, “We’re all a little rare; but, when we fall into mutual rareness…We Call It A Family!
My name is Lenka, I was born in Czech Republic in 1984 with PWS on my right side of my face. Growing up I faced bullies, but I became confident women and I would like to inspire others. I am ready to run a Czech Facebook page for adults as we only have only pages for children and parents. I would like to bring more awareness here in Czech Republic and I am ready to help people with the similar problems in any way all over the world.
Hi. I am a mother of two kids. The eldest has a lymphatic malformation for which she has had many procedures. With a few friends I started Stichting Benthe, a non profit foundation. I want to help VBF promote awareness!
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.
Hi! I was born with a Port Wine Stain birthmark covering 45% of my right leg from hip to toe. Luckily, my mother worked at a hospital and knew many doctors, so I was treated with amazing care since birth. I’ve had countless surgeries and treatments to help with pain, swelling, and appearance. Since being aware of VBF, I have begun educating myself about my legs and people who live with similar experiences. Raising awareness and acceptance is something I can’t wait to become a part of!
My name is Rachel Hudson and my 6 year old daughter Hadlee was born with a Port Wine Stain on her left eye and forehead. Hadlee had her 5th laser treatment at the 2018 VBF conference in NYC and has had amazing results. We were misinformed about birthmarks when she was born and found VBF through research. When Hadlee was born, we were told her Birthmark would disappear and not to worry. The VBF informed us bout treatments and the chance of developing SEO. Hadlee received ultrasounds and sees an ophthalmologist regularly to be sure she is in good health. The VBF is such a huge part in Hadlee’s health and confidence. Hadlee already knows enough to explain what a PWS is and why she needs treatments. She loves animals, reading, school, and making new friends. We are so grateful for the VBF and everything they do for us.
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.
Hi my name is Razle, I have PWS covering almost all of the left side of my body. Ever since I found a group that deals with birthmarks, I have become more eager to learn about it and much more interested into how many others who have birthmarks handle theirs, as well as what treatment their doctors use. I have never been treated once my entire life. However, I learn to appreciate mine, and am considering not to undergo any kind of treatment at all. Nevertheless, I used my situation to teach kids to become more respectful, as I am a teacher. I know what it is like to be stared at with critical eyes, and I just want to help make a difference.
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.
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