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!
Hey! I’m a 35 year old Police Sergeant, husband, and father to two wonderful children. I’ve had a port wine stain on the left side of my face/neck/lip my whole life. Growing up, I went through the all of the normal awkwardness of being a kid, with the added pressures of looking different. Although I didn’t realize it then, the adversities I faced made me a stronger person. Today, I get to enjoy my life and family as a guy who can face just about anything. However, my confidence didn’t come easy, and I wish I had someone in a similar circumstance to lean on as a kid. For this reason, I’m happy to be an ambassador, to share experiences and help young kids with birthmarks in any way I can!
My daughter London and I have joined the Ambassador program together and here is her story! My name is London and I am 9 years old. I was born with a hemangioma directly underneath and to the corner of my right eye. The placement and the speed in which it was growing, encouraged my Dr and parents to start propranolol and later laser treatments. After 7 laser surgeries the hemangioma is gone. A scar remains and it does not bother me. It reminds me of my amazing story every day. I love it. My Mom, Casey, also was born with a strawberry hemangioma on the top of her head. It is gone now and they did not have to do any surgeries to have it removed. I spread awareness at my school with the Buddy Booby Book, wear your mark/heart day, as well as sharing my stories with everybody I can. I’d love to become an ambassador and help other kids like me get through a difficult time with their hemangioma or other birthmark.
My daughter, Reagan, was diagnosed with a large, compound, segmental hemangioma of the scalp with a portion abutting the spinal dura at 1 month old. After being thoroughly tested for and cleared of PHACES Syndrome, she has taken Propranolol for 13 months. We experienced several ulcerations, full sedation for MRI/MRA, a cardiac consult and testing, a neurosurgeon consult, and over a dozen dermatology consults. Her hemangioma is now in involution, and we are beginning to wean from Propranolol and look forward to the next stage of our journey – helping others advocate for their children and care for all children with vascular birthmarks.
I’ve had a large birthmark on my left leg since I was born in ’93, but I wasn’t diagnosed with KT Syndrome until 2012, when my pain started. Since then I discovered the VBF, which has been instrumental in getting me help with experts on my condition. As a global ambassador, I hope to get that same help to others in the Vascular Birthmark community that may not be aware of the VBF, and would greatly benefit from their resources, as I and many others have.
I have lived my entire life with an untreated port wine stain vascular birthmark that covers most of my left arm and shoulder. When I was younger, I struggled with the insecurity that comes with being “different” than most. However, I have come to embrace who I am and I am looking forward to helping others who can relate to my situation. I am an active duty officer in the US Navy, currently stationed in Omaha, Nebraska.
Mother of a beautiful girl with a PWS on her left side of the face. At the beginning of our journey nobody knew what was on her face, we went to so many medical examinations with no luck. Thanks to VBF and support groups on Facebook, we found Dr. Linda and learned everything about our birthmark, and now we are seeing Dr. Geronemus in New York and finally we are satisfied that we are doing the best for our child. As a parent who did not know that PWS exist, we are very grateful and it is very important for us to share awareness.
Martin was born with faint, pink marks that we were told were due to birth and would fade. They didn’t fade; they got brighter and darker and became raised, it covered his back, half of his chest, full arm and side of his head. He was misdiagnosed and when his skin started to open with sores we took him to the ER where many tests were done and in a couple of days was diagnosed with PHACE Syndrome. He was two months old, we were terrified, something we were told would not be any harm was actually internally affecting him and was potentially life threatening as they were unsure he was getting enough blood supply with the narrowing of his arteries. He started taking propranolol to fade the hemangioma and we became experts at bandaging our months old baby so his sores would close and not become infected. His few physical delays didn’t stop him as he is now a four-nado who loves to run, play and sing. He is no longer on propranolol but is on a daily aspirin as a blood thinner for his narrowed arteries and he is still at risk of stroke. He will continue to have many annual tests done and our journey continues as he starts school this year. We are truly blessed to have him and we adore his beautiful PHACE and soul. <3
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.
My name is Alana Dolcemascolo. I have a venous vascular malformation on my right arm. I had 17 sclerotherapy treatments with Dr. Robert Rosen in NYC. Also I volunteered at 2 of the VBF conferences in NYC. At the age of 6 I had my first surgery at Lenox Hill Hospital.
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!!