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
On June 17, 2020 I was blessed with our beautiful Xander. His birthmark was not a conversational piece during our hospital stay (maybe due to our COVID story) but his siblings loved it and said he was Prince Zuko (Last Air Bender reference).
On our 2 month check up appointment, I mentioned a pump on his head on the same side as his PWS. A CT scan later we were informed that our baby boy was diagnosed with Sturge-Weber Syndrome. As you can imagine, confusion set in but here we are learning and supporting just the same way you all are.
When I was little I was always asked what happened to me and people told me that I was born with my PWS because my mother had seen an eclipse while she was pregnant with me.
That, with other many reasons, is why I have joined VBF, to spread awareness and information about vascular birthmarks.
My daughter’s name is Maria Jose, and I’m known as Majo. My birthmark is on my forehead, between my eyebrows. I have gone through many procedures, laser, and medications. Even so, it hasn’t impeded me from having a normal childhood and being full of happiness. At my three years of age, I’ve learned to identify my daughter’s hemangioma as part of her, which doesn’t take away her happiness, but makes her unique.
Mi nombre es María José, me conocen como MaJo, mi marca de nacimiento se ubica en mi frente, entre mis cejas, he pasado por largos procesos, láser, medicamento y observaciones largas, no obstante esto no ha impedido que mi niñez sea de lo más normal y llena de alegría, a mis casi tres años he aprendido a identificar mi hemangioma como parte de mí, ya que no me impide ser feliz, sino que me hace unica.
Hello, My name is Marianna. On the 6th of May, 2018, I gave birth to my first baby, Angelica Rose. Angelica was born with a Port Wine Stain that spreads across both sides of her face. My experience as a beauty therapist gave me quite an understanding of the skin condition itself. I also noticed she has a stork bite on the back of her head, as well as a Mongolian spot on the back of her head. At the hospital, they made me aware of the medical conditions connected to PWS, as I didn’t have as much knowledge before her birth. So far, Angelica is clear of SWS and Glaucoma, and is due to start laser treatments in July of 2019. My mission is to continue to educate others about vascular birthmarks, the importance of treatment and raising awareness.
Hi. I am Marina. I have PWS on the left side of my body. (Arm, chest, and side) My stain is flat but looks like I have bruises or a rash. People tend to stare..so I try to educate them.
My sweet baby girl Claire was born with a port wine stain on her right cheek, eye lid, and scalp….she has had 5 laser treatments in NYC. She is under the care of Dr. Theresa O. She is a vibrant little lady who loves her siblings very very much. She is just 18 months old. We did not continue with testing for other complications as she is hitting every milestone beautiful. I’d love to support other families in my area as well as have them support us. It’s been a long year and half as we fear bullying as she grows up.
Hi, my name is Martina. I’m Italian and I’m 19 years old.
I have a port wine stain birthmark and Sturge-Weber Syndrome. I grew up with a really important phrase in my life which was and still, is “You are unique”. During my life, this phrase helped me realize how unique my birthmark is and how important it is to love it. Throw the years the bullies made me a stronger person with a lot of more confidence.
I’m Mayondi Jayasundara (29years old) from Sri Lanka. When I was a little child I didn’t have much bad experience with my birthmark. When the time came for me to start college life, I felt so different from my colleagues. Most of the girls had boyfriends, and no one interested in me. Time went on, and after 13 yrs of school life I became a graduate at the University of Colombo as I completed my Masters Degree last year. Very recently, I married a very handsome gentlemen. My parents are always backing me when something bad happened in my life because of my birthmark. One year ago, I did my first surgery to balance my bulky lip due to this birthmark. I’m looking for laser treatments in other counties since laser treatment professionals are not available in Sri Lanka.
Anyhow today I’m a happy woman.
Dominic was born prematurely and covered in hundreds of Hemangioma. In the NICU they discovered that he had a ruptered AVM in his brain and was in high output cardiac failure from a hepatic AVM. He is a fighter and has fought from day one.