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
Please see Lola’s Hemangioma Story which I previously submitted to Stories of Hope.
I have Sturge-Weber Syndrome type 2. I have a facial PWS birthmark and Glaucoma. I also have a shunt for hydrocephalus.
I joined the VBF Global Ambassadors because I wanted to show the world that people with birthmarks are awesome, and we can do anything!
Hello! My name is Alyssa and I have a port-wine stain that covers roughly 75% of my body. It hasn’t always been easy, but I have grown to love my birthmark. I am so glad to finally have a birthmark family that we all can relate so deeply with each other. I have loved getting to know so many in the community, and I intend to promote vascular anomaly awareness to as many as I can.
My name is Amanda Byram. I am from a super small town in middle Georgia. I remember growing up feeling like I was the only person in the world with a port wine stain. It was such a lonely feeling. One day, I decided to search the hashtag #portwinestain on Instagram, and immediately my world got A LOT bigger.
I immediately began reaching out to people, joining groups, and learning to love my birthmark. I have made SO many genuine friendships over the last few years thanks to the various groups and social media in general. I love seeing people with port wine stains “in the wild” (as I like to call it). I always try to approach the people I see to at-least say hi and introduce myself.
I am now married with two beautiful girls. I am doing my best to raise my girls to have confidence in themselves. I started embracing my birthmark years ago and I hope my girls will look up to me one day and know that they are beautiful.
I want to help others love themselves as well. I know how lonely I used to feel so if I can help one person not feel that way, I’m happy. I am so proud to be apart of the birthmark community.
I have a port-wine stain birthmark that covers the front of my right thigh. Growing up, I remember feeling so alone. I never saw anyone who looked like me. Ever. I spent years hating my birthmark, and, as a result, I refused to wear shorts or skirts, even when I was at home. It didn’t matter that my family never made me feel ashamed of my birthmark, I felt alone.
My mindset changed when I entered my teens. Little by little, I started to talk to my friends about it, and, to my surprise, they weren’t shocked or disgusted. It wasn’t a big deal to them and, somehow, that taught me that it wasn’t a big deal to me either. Not as big of a deal as I’d originally thought, at least.
Today, I still don’t always feel comfortable leaving the house with my legs bare, but I’m working on it. I’m not ashamed, and most importantly, I don’t feel alone anymore.
Hi everyone! My name is Amanda, I am 27 year old and I have a facial Port Wine Stain on my left cheek. I underwent laser surgeries at the age of 3, and continued to do so until I was about 13. I decided for myself that I didn’t want to go through the hassle and pain of laser treatment, and wear my birthmark proud now! It was a process of acceptance for me, and have fully embraced it now. I also am the daughter of two deaf parents, and am fortunate to have had them model what it’s like to be unique and different. Additionally, I am a certified ASL interpreter, Have a certification in ADA basics, and have a passion for disability advocacy!
I was born with a facial port wine stain (and Sturge-Weber) all over my face and all over my body. With this I also suffer from Rhynauds disease in my right hand. Since being a baby I have had a lot of Lazer treatment on my face to reduce the redness. At age 12 I started to wear makeup to cover my port wine stain on my face as it gave me confidence issues, but camouflage was so heavy and cakey that I decided to start using “normal” drugstore makeup to help cover the redness. I found a technique and makeup brands which I like so then decided to create a instagram account to help out others who struggle with confidence issues abd help them achieve perfect coverage of their birthmarks.
My 5 year old daughter had PHACE syndrome. I’m anxious to help VBF spread awareness.
When I was born little to nothing was known about PWS. Treatment was non existent. When I was 16 I began my laser journey with the first laser used to treat PWS, and I still have scars. Treatment and knowledge has come so far, and it is so exciting to see the strides being made in research, outreach, and treatment. Today my PWS is just me, it has shaped me to become a caring and empathetic person and guided me into a helping profession.
My baby was born with a hemangioma in her mouth and nose. When she was a week old she started ulceration. At that moment, we started to look for help. Sadly, we couldn’t find a doctor in our country who could treat her. She took propranolol, atenolol, timolol and she received laser. Nothing worked early on, so we started to look for options on the internet which is where we found Dr Linda. She told us to contact baby face foundation. After a year of waiting, they took us to New York and Dr. Waner and Dr. Warren made the reconstructive surgery for my baby. We found angels in this journey that have changed my baby’s life and we can’t be more thankful for this opportunity to spread awareness!