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.
I have grown up with a PWS and want to help spread awareness online and help others with PWS and other birthmarks to accept their “marks of awesome”. I have been promoting PWS on my Instagram and have been featured on BBC Instagram about my birthmark.
A little about my daughter Alice – she is the youngest ‘twincess’. They were born at 37 weeks, she weighed 5 pounds 4 ounces, and her hemangioma came up as a little scratch at two weeks old. Alice was diagnosed with a Hemangioma on her right eye lid when she was 3 weeks old. She falls in the 10% of having to see medical specialists. We are planning a Car Show charity event in honor of Alice for VBF.
Jayden has Sturge W.S with Glaucoma (Baerveldt Shunt) on right eye ,epilepsy and he has already been treated with 3 surgeries for hemangioma. He is 10 years old and we started with laser surgery in New York, NY.
I deal with multiple venous malformations in both my legs and even in my hand. The one in my knee causes constant tendonitis so I understand when kids have chronic, hidden pain that flares up. I also have the genetic PTEN Hamartoma Syndrome which likely caused my VMs.
Every year I support VBF’s mission by donating my birthday money and the #PutOnYourBirthmark campaign to help raise awareness. I hope one day to become VBF’s teen advocate.
Hi my name’s Jed, I’m from Australia, I have a birthmark on my right side of my face which runs up through to the top of my head and i had it well, since i was born! I had lazsor treatment to reduce the brightness off my birthmark since birth untill i was about 7-8 yrs then i learn that it would never “go away” i simply embrace it and live with it, you get some stares some comments to, ive learnt just to ignore it over the years. I’m now 17yrs old and i am currently finishing school and aspire to become a fisheries officer in the future. I want to spread my thoughts and story of my birthmark and hopefully become an ambassador for you guys! Would be so awesome to have a community like this to be apart of. So glad there is something like this out there love your work guys!
Jeff Bergen is a former Navy Corpsman who completed 8 years of active service and was honorably discharged. After the Navy he went to nursing school and later went on to attain a Master’s Degree in Nursing. As a Registered Nurse, he has worked in infectious disease and oncology nursing, and was a hospital epidemiology nurse. He is certified in infection control and health care quality. He is currently the manager of the Office of Licensure, Accreditation & Regulation at Cedars-Sinai Medical Center in Los Angeles, CA. He is also pursuing his PhD in Nursing through The Catholic University of America. Jeff is an established patient at the Beckman Laser Institute where receives treatment for his portwine stain.
A small red mark appeared on my daughter’s forehead at approximately 2 weeks of age. It got bigger, more red, and bumpy in texture within a few weeks, which was terrifying as new parents. People would stare, comment, and look concerned as we passed them. We did our own research and saw our pediatrician who confirmed it was a hemangioma. With being hesitant about medications, we chose not to medicate at that time and continue to track it with the pediatrician and dermatologist. Her hemangioma stopped growing when she was about 12 months old, and has since been fading. At 18 months we decided to try topical Timolol medication, and at 22 months decided to start oral Propranolol as well; both to see if the process could be expedited. We love Nora no matter what and we are so glad to be an advocate for her and others that make birthmarks beautiful!!
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
I was born with a port wine stain that covered most the left side of my face. My mother took me to doctor after doctor, but there was no viable treatment. So I grew up with a big purple mark on my face, and it was not easy. As I got older we tried using makeup, but Covermark was the only thing we could find, and it was thick and plastic, and took a long time to apply. By the time I got to college I had discovered a theatrical makeup, Panstick, with which I could create a mask to hide behind. For the first time, people who met me, saw a normal, if heavily made up face. I was nearly 40 years old when the first lasers were approved for experimentation. The ruby laser faded the birthmark, but it left scars. Today I am a grandmother, and after more than 35 treatments, my birthmark is light enough to be covered with ordinary treatments. Many days, I feel comfortable enough to wear no makeup at all. I published e a memoir of living with a birthmark, Marked for Life, which is available on Amazon.
I live in Umbria, Italy, and would be happy to share what I have learned with others. Sono in grado di aiutarvi anche in Italiano.
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.