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 was born with venous malformation but wasn’t diagnosed until I was 4. I have had around 30 surgeries since then (and still counting). I have had 2 hemangioma surgeries as well. My birthmark is on my left leg and my hemangiomas are on the top right of my lip. I live in Idaho but have to travel to California for treatment.
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.
My daughter Madeleine was born with a little pink patch on her left upper arm. I did a lot of my own research and found it to be a mixed hemangioma. It started to grow, the red got brighter and more raised, her arm had a bulge and was blue all the way round as if she had been bruised. We finally got a referral from our GP and at 6 months given an appointment to great Ormond street in London. We went for our appointment and started on Propranolol. Madeleine has also always had a patchy right arm. And at the age of 11 months after seeing Dr. Glover now have a diagnosis of a capillary malformation. Along with this she also has a stork bite on the back of her neck and a blood disorder (which isn’t linked to any of her birthmarks). I have spent hours and hours researching vascular birthmarks and feel that in the UK there isn’t enough information available. I want to be able to help spread awareness! I wish I had found someone earlier in our birthmark journey. I feel that people with birthmarks are not always accepted as well as someone without a birthmark, but I do feel this is because many people do not know anything about them. I didn’t, until my daughter was born with one. I want to use my spare time to raise awareness and acceptance for people with all types of vascular birthmarks, and to let people know about VBF and the hard work and support they give to not only the US but also the UK and every other country where people are seeking advice and help. Birthmarks are beautiful! They are not imperfections they are perfections.
Hi everyone! My name is Nicole I’m 24 years old and I was born with a Port Wine Stain birthmark on the right side of my face. Ever since I was a couple of days old I have been getting laser treatments on a consistent basis and continue to do so. Laser treatments have become a normal part of my life and I couldn’t imagine it any other way. It is my experience with being a life long patient that has drawn me towards the medical field and wanting to help others as a Registered Nurse. I strive not to let what people say about my birthmark effect how I feel about myself and to instead use it as an opportunity to educate and increase awareness. I want to promote supporting one another and embracing all the unique things that make us all different but even more beautiful!
I was born with a rare vascular malformation called klippel trenaunay syndrome that affects my right leg.
From my condition, I live with muscles contractions, shortening of my leg a fused ankle, nerve damage and lots more. However, horses have always been the one thing that has adapted to me as things changed, and the one think that has kept me sane.
I’ve been riding since I was two, but over time it took a back seat to health and treatments. As time progressed, I rode more and more. I went through the pony club levels to reach my K certificate, then became a part of the RDA. Later in life, I became an independent rider which led time to Para Dressage. It’s my dream to ride overseas for Australia and use my competition to promote and raise awareness of KTS and AVM, and show others that no matter what you are given you can keep going, and make the most of it. Riding is a freedom that cannot be explained – the horse gives me the legs I lack.
I was born with a rare vascular malformation called klippel trenaunay syndrome that affects my right leg and from 95 embolisation – 79 of these embolisations where done in the USA, my family had traveled there 18 times over 8 years, we lived there for two and traveled for the rest – these where testing time on my amazing mum, who had shear determination to get her daughter healthy.
Now from theses treatments I’ve ended up with muscles contractions, shortening of the leg and a fused ankle, nerve damage and lots more but horses have always been the one thing that has adapted to me as things changed, the one think that has kept me sane and at times drive me mad!
I’ve been riding since I was 2 and over the time of travel it took a back seat to health and treatments then as time progresses and a small bump couldn’t kill me, I rode more and more. I went through the pony club levels to K certificate and was also apart of RDA at later times as an independent rider, this led time to Para Dressage. I became a grade 5 Para rider in 2012 and have been come up the level a ever since and well I’m not your typicle Para Equestrian I’ve ridden in all types of competitions including: dressage, showjumping, eventing, campdrfting, stockmans challenge and lots more.
It’s my dream to ride overseas for Australia and use my competition to promote and raise awareness of KTS and AVM and show others that no matter what you are given you can keep going and make the most of it.
Riding is a freedom, that can not be explained – the horse gives me the legs I lack
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!
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.
Hello VBF! My name is Patrick Rose. I am 26 years old with a port-wine stain birthmark and SWS. My port wine stain has required 27 laser surgeries, the last one being when I was 12 years old. I was also born with glaucoma and SWS leaving me legally blind in both eyes. I joined this group through recommendation from a friend of mine who some of you may know, Scott Cupples. As a child I was bullied and very self-conscious of my birthmark. At the age of 15 I discovered a passion for fitness and haven’t looked back since. Fitness is what helped me gain the self-confidence to embrace my birthmark. To stand out, to look different from others is a gift. It makes us unique. There are still times where I get self-conscious but I’ve grown to realize, that WE are our own worst critics. Everyone has things that they don’t like about themselves. I am also a bodybuilder, personal trainer and fitness enthusiast in my free time. I encourage all of you to find your passion and embrace it!