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 am Scott Cupples, Lead Ambassador of the VBF Global Ambassador Team. I have lived my entire life with an untreated Port Wine Stain vascular birthmark up until starting treatments last year (thanks to VBF). Of course there have been times where my birthmark has made me feel insecure, but I’ve always had the mentality that it will never keep me from accomplishing what I want in life. In addition to my role at VBF, I work in corporate finance and serve in the Air National Guard as a First Sergeant. My goal with VBF is to help as many families as possible who are affected by vascular birthmarks, and to continuously spread awareness.
I surprised many when I came into this world born with a Port Wine Stain Birthmark. There was simply no knowledge of why, or how to treat. With the exception of experimental argon laser at a young age, my birthmark grew and thickened for many years until I was 36 years old when I had the first surgery to debulk my birthmark. The Vascular Birthmarks Foundation does an incredible job bringing much needed awareness to the world!
My son Jade-Luccas was born with a facial birthmark (Port Wine Stain). We visited a few dermatologists in the Mea and they all agreed it will lighten by the time he turns 7. Luccas started seeing himself in the mirror, and would try to wipe off his birthmark and ask why it was still there. In school, he was bullied. We started to research doctors around the world, and found the Vascular Birthmarks Foundation and Dr. Linda helped us! We decided to write a book and shed light on raising awareness regarding birthmarks, and increasing social awareness in the Middle East towards accepting others and tolerance.
I am a mother of a beautiful boy Zachary who is currently 3 years old and is just starting his laser treatment journey on his PWS at the John Radcliffe Hospital Oxford . We live in Wiltshire in the United Kingdom. My hope is to bring a connection to others in the UK to VBF and to bring more awareness. Currently I run a PWS support group here in the UK through Facebook which has reached out to over 400 members and is continuing to grow. Members are parents, adults with PWS and anyone else affected by PWS.
In 2016, my first-born child, Florence, was born with a facial V2 port wine stain. Like others, my wife and I were left bewildered as to what steps to take next. We sought out the VBF who provided us with guidance on treatment and opened a global support community to us. We have since completed 12 treatments. Grateful for the support we were given, I set about organizing a fundraising and awareness campaign for the VBF in which I completed Norway’s toughest mountain race, raising $4,000.
Our daughter Patricia suffered from severe Laryngomalacia and Subglottic Hemangioma which blocked her airway. We thought everything was ok, as it was not until 2 weeks after being born that she had difficulty breathing, and had to undergo Tracheostomy. We could not find any hemangioma experts in my country, and almost lost hope until my wife came across the Vascular Birthmarks Foundation. Dr. Linda Rozell-Shannon and Dr. Gregory Levitin helped us get more information about Patricia’s condition and proper treatment. Now she is almost three years old, energetic and healthy – which wouldn’t be possible without the Vascular Birthmarks Foundation.
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.
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.
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.
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!
