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 a PWS on the right side of my face. I have had several laser treatments, but stopped having them regularly when I was younger. It’s always made me unique and I wouldn’t trade it!
I was born with my port wine stain. About 2 years ago I developed a lump under it, and was told it was a lipoma. Went to a general surgeon to have it removed, he refused and wanted and MRI. At that point I found out I had an AVM. I have had it embolized 3 time with black onyx, but it kept growing back.
At this point I have had 2 ethanol embolization with Dr. Yakes. It definitely has not been easy, but I find great strength in my kids. The amount of pain I live with daily is unreal. I never imagined it would develop into something else. I have always been asked about abuse and people saying that I have a red bloch on my back, then having to explain that it’s a port wine stain and I was born with it.
Hi my name is Stacy and I am 32 years old and lived with port wine stain my entire life. I suffer from earlier morning flare ups and emotional swelling, unaligned spaced out teeth, bad gums on my right side. After entering the adult world I learned to embrace who I am and love the skin that I am in. Kids would make fun of me I’d shy away from the world to avoid anyone noticing that my face was not aligned or swollen on certain days. Today my goal is to reach out to every person who has PWS and tell them how beautiful they are inside and out. Nothing more matters then what is on the inside.
I am Stacy from Greece. I have a 16 year old daughter with KTS and DVT. She only had symptoms last April, unfortunately with PE. I want to help people to accept their rare disease and doctors learn about it.
I’m Lucy, I’m 15, and I have a port wine stain, Klippel-Trenaunay Syndrome and hemihyperplasia. One side of my body grows faster than the other, I have weak muscles, bones and immune system and I’ve had over 40 surgeries since I was 10 months old. I’m a dancer and don’t let my conditions stop me from doing anything.
Hi! I’m Tammy Morris. My daughter Vivienne is 2.5 years old and was born with a port wine stain on the left side of her face. When she was born I initially didn’t realize it was a port wine stain – the pediatrician was the one to confirm it. New mother emotions had me very worried about how others would treat her and how she would feel about herself. I was quick to search port wine stains on the internet, and one of the first sites I found was www.birthmark.org. I read about laser treatments on the stain and how it helped many others. Before I could even say anything about treatment, our regular pediatrician had been in contact with a local pediatric dermatologist, and they recommend laser treatments. Vivienne had her first treatment when she was only 2 months old. She has had regular treatments, scans and ophthalmology check-ups. We are happy to report, at this time that no other condition have been detected in conjunction with her stain. I am so thankful for all that VBF does. We love helping others by spreading awareness, and VBF has been a great tool in raising awareness with those around us.
Hi! I’m Tammy Morris. My daughter Vivienne is 2.5 years old and was born with a port wine stain on the left side of her face. When she was born I initially didn’t realize it was a port wine stain – the pediatrician was the one to confirm it. New mother emotions had me very worried about how others would treat her and how she would feel about herself. I was quick to search port wine stains on the internet, one of the first sites I found was The VBF website. I read about laser treatments on the stain and how it helped many others. Before I could even say anything about treatment, our regular pediatrician had been in contact with a local pediatric dermatologist. Vivienne had her first laser treatment when she was only 2 months old. Vivienne has had regular treatments, scans and ophthalmology check-ups. We are happy to report, at this time, nothing more has been detected in conjunction with her stain.
I am so thankful for all the good The VBF does. We love helping others be aware and VBF has been a great tool in raising awareness with those around us.
From birth I noticed these red spots I believe were due to trauma from my C-section. Both of my twin daughters have hemangiomas. Twin A having the largest one on her neck. Twin B never bothered her and are small enough to never cause concern. My daughter, Twin A, hemangioma on her neck began to ulcerate when she was 9 months old. Through our family doctor and now two different dermatologist it has started healing with starting propranolol and laser dye treatments. I’ve very thankful for the vascular birthmarks community for the knowledge on vascular birthmarks like hemangiomas and hope I can be of support to others.
I’m 42 years old, and my PWS birthmarks cover 75% of my body. I used to struggle with having them until I was 14. Since then I’ve embraced them. I love standing out, and letting people know I don’t care. My kids friends think I’m awesome. They love coming over and hanging out with me. I joined the Ambassadors to let people know that it is okay to be different.
Growing up with a birthmark wasn’t easy. I was teased a lot, and it made me self-conscious. Over the years, I grew to love my birthmark which plays a big role in becoming an Ambassador. I want to show others who have vascular birthmarks that it’s okay to be different, and to be proud of what makes us unique!