The Vascular Birthmarks Foundation
Dr. Linda Rozell-Shannon, PhD President and Founder
Dr. Linda Rozell-Shannon, PhD President and Founder
The Global Ambassadors are a network of advocates for the Vascular Birthmarks Foundation who work together to raise awareness about vascular birthmarks, anomalies, and related syndromes all while cultivating a supportive community. We are organized into five fundamental committees, which are led by members of the VBF Global Ambassador Council. Our council is composed of the most active advocates within the Global Ambassador program who donate extra commitment time towards maintaining program engagement. Each committee initiative serves the purpose of expanding our reach together to those within our birthmark community as well as to those unaffected. Our committees consist of Regional & Virtual Meet Ups, Awareness, Fundraising, Ask/Accept Anti-Bullying, and the Parent Advocacy Network. The Global Ambassador Program demonstrates VBF’s incredible mission, provides helpful resources to our network, and highlights Dr. Linda Rozell-Shannon’s vision through each step of the way.
Regional and Virtual Meet Ups organizes, facilitates, and encourages members of the VBF Global Ambassador community to connect through channels beyond social media such as Zoom meetings or in person local meet ups.
Fundraising helps our community raise funds for VBF through online and in person events which goes towards our mission of networking those affected by a vascular birthmark, anomaly or related syndrome (VBARS) to the appropriate medical professionals for evaluation and possible treatment.
Awareness is designed to help educate, spread VBF resources as well as expand the VBF Global Ambassador program by connecting Ambassadors with areas of interest in the Vascular Birthmarks Foundation network.
Ask/Accept Anti-Bullying promotes a ‘Bully-Free’ zone and will raise awareness in regards to handling bullying, acceptance and provide support within the community.
Parent Advocacy Network is a safe space created to help navigate the journey for parents and families with children affected by VBARS.
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.
Hi!
My name is Aslan. I was born in 1983 in Ust-Kamenogorsk city, Kazakhstan (then part of the USSR). My birthmark became apparent when I was one year old. It was upper right lip haemangioma. By then, my family had moved to a village 500 km further east of Ust-Kamenogorsk near Altay mountains on the border of China, Russia, and Mongolia. It was difficult for my parents to treat the VB as it required traveling 500 km back to the city and staying at a hospital. Especially as they had other commitments and other children. Despite difficulties, my first operation was when I was three years old – it was an alcohol injection, so-called sclerotherapy. After that, I had a lot of such injections and countless treatments, operations, and just medical observations. In 1995 doctors experimented and made the operation – blocking the carotid artery with the idea of limiting blood supply to the VB. It came out with no effect. Subsequently, my VB grew slowly on my cheek and remained stable. My family then moved to Almaty – then the capital of Kazakhstan. There I was treated by another type of sclerotherapy, not alcohol, but Aethoxysklerol. Again, no visual effect. Most lately, I was treated in one of Korea’s top hospitals, but they again offered only alcohol injections.
By the time of my medical treatments in Korea, I was married. My wife and I decided to leave the VB. Since then, we have had twin daughters and a son born. I graduated from a top business university and, for the last 15 years, held various business-related top management positions, managed people, and coached employees. I also met with world leaders in specific business areas, worked with them, and earned their respect, which I am incredibly proud of.
Recently my family and I moved to New Zealand, and I am doing my MBA here, funded entirely by myself with the money I earned myself over the last 18 years of my career. Here, I also work part-time as a Finance Manager. I have a great LinkedIn page with many followers.
I love running, and in 2022 I ran two 35 KM trail races, one full marathon of 42 KM, and recently I ran an ultramarathon of 62 KM. My VB is not an obstacle, and it is motivation! Motivation to move forward and win!
I want to raise awareness about VB and help people overcome mental obstacles to become stronger and more resilient. I want to run for a cause. I will dedicate each future marathon and ultramarathon runs to the VB foundation! And I hope you accept me as a VBF Global Ambassador!
Sincerely,
Aslan Juassov
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.
I was adopted as a baby from Seoul, South Korea. In Korea my birthmark was considered ‘special needs’. I grew up in a small town in northern Minnesota not only not only as a different ethnicity than my peers but also with a large facial birthmark.
As I grew up, my birthmark became something I was self conscious of. I began wearing makeup as a security blanket, something to hide behind. After college, I began experimenting with makeup as a creative outlet. I slowly began to share myself with and without makeup hoping to inspire those around me to learn to love themselves.
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.