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. 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 find personal support from other patients and families based on their own unique experiences.
Scott Cupples
Director, VBF Global Ambassador Program
ambassador@birthmark.org
I was born with an AVM, which is an extremely debilitating and disfiguring malformation located in the left side of my face. I have been receiving treatments for this since I was 9 years old and have had 69 surgeries to date with more to come. Through this process I had become disfigured, swollen, and unable to move half of my face. I suffer from chronic bleeds that typically result in blood transfusions, passing out, and emergency surgeries. I was able to gain some of my confidence back through reconstructive surgery. But what really keeps me going is fashion. I started my own clothing brand called Wishlist by Ashley Marion, where I design, pattern, and sew everything. This has been my creative outlet the past few years. Together with VBF, we host annual Fashion Show Fundraisers and put the proceeds towards AVM research.
Alyssa is a 14 years old from Concord, NC and is not your typical teen. She is a competitive hip hop dancer & middle school cheerleader. She entertains audiences with stand up comedy routines, and impressions of female comedians like Miranda Sings. She is a runway model and loves fashion shows. She has a PWS vascular birthmark on her left arm from fingertips to shoulder, and in several other places on her body. Not only has she been bullied at school because of her birthmarks, she’s been embarrassed by suggestive questions from adults and peers about what her birthmarks could be. To date, photographers have been the most accepting of Alyssa’s image. It’s rewarding when I read the social media messages from other girls her age who are inspired by her tenacity to pursue modeling and acting and the reposts from women who wish they had the courage to put themselves out there like Alyssa has. Alyssa brands herself as a Vascular Birthmark Ambassador, encouraging young girls who also have one to feel empowered to pursue their dreams and show off their birthmark.
My life started with a PWS and 100 questions about it. As a child, I went to the Dermotolgist regularly but there were no answers for my parent back in the early 80s. I never had any time of treatment until I was 24. I had always used makeup to cover it and the. Would go through phases of not caring about the PWS. I started treatment and I did not get results until my 30 treatment. As I turned 35, my PWS started to change and I started growing nodules (huge bumps) on my PWS. I am an educator and I always have children asking me what happened to my face and why I have bumps on it. I was asked to change grade levels because I was scary to the kindergarteners. Now I teach 4th grade. It’s been tough wishing for the answers and not having to go through the pain of laser treatments. I have had so many and each time there is a new type of laser, my doctor recommends me to try it. After the stubborn nodules have not disappeared, I have given up on treatments. I’m almost 50 years old and I’m tired of trying to look like everyone else.
My Name is Ava Pyles and I have a vascular birthmark on the left side of my face. I found out about VBF through social media and thought it would be a good way to connect with others with vascular birthmarks. I became a Global ambassador so that I could connect with others like me and share my story. It has been a great experience and I have made some great friends.
I’m Avery and I am 22 years old! I was born with KTS and have undergone a slew of management procedures in the past 22 years! I am graduating college in December and plan to attend Vet school next fall! I myself have experienced the difficulties of dealing with self image and just want to share with the world that port-wine stains are beautiful and unique!
I have a port wine stain on the left side of my face, I have had it since birth and I have had 27 operations in 10 years when I was younger. I’d like to be able to help people understand and be more aware of port wine stains and all birthmarks and I think through this I’d he able to help.
I am Batool Kaushal from India. I have lived 54 years of life handling bleeding and pain due to Arteriovenous Malformation of my Pelvis, right leg and foot. I had four surgeries before attaining the age of four. Doctors presumed it to be rectal piles and the bleeding did not stop, till I was operated for pelvic hemangiomas at the age of 18. Eight hour long surgery stopped my profuse bleeding but my leg and foot AVM continued to give me severe pain, till I found Vascular Birthmark Foundation online and approached Dr. Linda, who arranged my leg surgery at Lenox hill hospital in NYC, in 2014. I continue to get advice from AVM team of VBF. I wish to support and help children and adults with Birthmarks in India and around the globe, so that patients like me do not suffer due to lack of awareness and medical aid anywhere in India and abroad.
When my son Jeremy was born the doctors immediately noticed that he had a slight drooping on the left side of his face. As a result, he was misdiagnosed and it was only after several different visits to doctors that we found that he had a venous malformation. He’s had several treatments and is now 14 years old and going into high school and thriving.
My son Jackson was born with a port wine stain. His doctors all assured us that the likelihood of him having Sturge-Weber Syndrome was very rare due to the size of the port wine stain. He was diagnosed at 4 months after a cluster of seizures. I now know that size of a port wine stain has nothing to do with brain involvement.
I would like to become an ambassador to help spread awareness and education about PWS, as well as Sturge Weber Syndrome.
My daughter Kennedy was born in 2014 with Kaposiform Hemangioendothelioma, KHE with Kasabach-Merritt syndrome. She was diagnosed correctly at a month old and spent many months in the hospital on steroids and chemotherapy (vincristine). After endless tweaks to her treatment, she was finally stabilized and able to go home. She suffered with extremely low platelet counts and internal hemorrhaging until she was stabilized. Currently she is thriving with little to no medical intervention as we call her KHE dormant. We are well aware of its ability to awaken, which would require her to start treatment again. We have documented her story on Facebook at Kennedy Dailey And The Search For A Cure To KHE.
