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 had a hemangioma since I was 10 days old. I grew up receiving a lot of stares and tons of creative questions almost every day. Those questions were:
1. what is it?
2. Is it Contagious?
3. Is it only on the face, how about the body?
4. I guess it’s a karma?
To handle those stares and comments, I handled it with grace. Despite this ignorance, it helps me to discover and venture myself into performing Arts, a platform that helped me gain my confidence. Although there were times I have tried to cover it with foundation and concealer. The amount of concealer needed still makes the birthmark visible. So, I decided to carry it with confidence. It does not prevent me from searching for jobs, making new friends, or from performing on stage in the theatre and showing people who I really am.
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.
Our family welcomed our sweet daughter, Reagan, into the world in September 2014. From this moment on, The Sheehan Family has immersed themselves into the birthmark community. Having attended the annual VBF conferences, participating in online Facebook chats, managing the network of providers in the Chicagoland area and hosting numerous fundraisers to support VBF. The Sheehan’s dedicate themselves to supporting all families who have children with a Vascular Birthmark.
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.
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 ot
My Daughter was correctly diagnosed with a VM at the age of 10. It is intramuscular as well in fatty tissue. She has had sclerotherapy twice so far. The blood clots that she has from her VM are very painful especially from puberty and extraneous exercise. Her VM is located on her gluteus and is almost covering the whole right side of her buttocks. It’s very lumpy and hot to the touch all the time. She has a hard time dealing with the stares that other people give her, even though it is covered in clothing. It’s hard as a mother to see my child worry about what people say and the stares, it’s even harder to know that she is constantly in pain and I can’t do anything to help ( she hates taking pain killers, so she just deals with the pain).
Hello, my name is Louanne. My life changed for the better 4 years ago when I gave birth to a beautiful baby girl who happened to have a birthmark on her cheek and chin. It’s been quite the learning experience throughout but I’ve since learned how to be a good advocate for my child. It’s also given me the power to help others who may be experiencing similar challenges associated with birthmarks; choosing the proper laser treatment, finding ressources, finding knowledgeable doctors, anesthesia concerns, self esteem concerns, addressing curious sometimes insentive people and the list goes on. With the help of the foundation I’ve become very comfortable with the decisions we’ve made for our daughter. If I can help you in any way, please feel free to contact me. I’d be happy to answer your questions to the best of my knowledge in English or en francais!
My name is Luis Casanova, and I am vascular Surgeon in Guayaquil, Ecuador. My wife has a AVM in the mouth. I have information that can help.
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.
When Lydia was born in 2013, doctors thought the redness on left side of her face was bruising caused because her twin brother had been on top of her during the birthing process. Six weeks later, a pediatric dermatologist officially diagnosed the mark as a port wine stain and her mother Kelly began scouring the internet for information and support. Lydia started treatments at 3 months old and began being monitored for Sturge Weber Syndrome. After discovering the VBF, Kelly created a network of Colorado port wine stain families that meet for play dates and share info. Lydia & Kelly believe awareness of vascular birthmarks leads to greater acceptance and they used an opportunity when a story about Lydia’s first day at preschool after a treatment went viral to connect with others all over the world. They look forward to raising even more awareness through the Ambassador program.