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
My name is Bishoy Alfons Adib, a young Egyptian man. I was born with a disease called ¨Sturge Weber Syndrome¨ (Hemangioma). When I was a kid, I didn’t know why other kids were afraid of me and avoided me. Some looked at me with compassion and others with disgust. So I started wondering why? My parents and teachers encouraged me not to suffer from depression.
When I was older, I understood my status, I realized that I was different and that God had given me a great gift, and this gave me great joy. For example, my face stained by the syndrome made me very well known and unforgettable in all my surroundings. Therefore, I had many friends. Since then, I stopped thinking that my face was a problem, because God created me in this form and blessed me in such a way.
I’m here to share more of my story. If you have any questions for me, don’t hesitate to reach out.
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 name is Brenna, and I am 22 years old. I have a Port Wine Stain that covers a large portion of the right side of my face. So far, I have had 10 laser treatments on my birthmark and only get them as needed. It took me a long time to accept myself and my birthmark but now, I am so confident and couldn’t imagine myself without it. Of course, not everything has been easy as a result, but that’s just pushed me to do and try harder. My birthmark does not define me, but it sure has helped me become who I am today!
I am 25 years old and was born with a port wine stain birthmark. I was always supported by my family and friends growing up but strangers were less kind. Middle school and high school was tough. After graduating I really found myself and the beauty in my birthmark and started to really embrace it . Some days I cover it with makeup still, but now when I do it’s no longer because I don’t like it . I know with or without that makeup I am so beautiful and blessed .
To all the little girls and boys growing up with one now , I know kids are mean . But you are so much more special and beautiful and unique because of it and God gave it to you because he knew you were strong enough to handle all that life will throw at you ❤️
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.
My daughter Kennedy was born with Kaposiform Hemangioendothelioma, KHE with Kasabach Merritt syndrome in 2014. She was diagnosed correctly at a month old and spent many months in the hospital on steroids and chemotherapy (vincristine). After endless little 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.
Growing up was always a struggle. I was bullied and excluded because of my birthmark. I have slowly grown to love and appreciate my birthmark, besides, it is a part of me! My birthmark has definitely made me a better and more compassionate person and I want to make a difference in ending bullying towards those with birthmarks!
This is my precious daughter Amayah posing with her book God Made Me Perfect: Amayah’s Amazing Birthmark, and her pediatrician, Dr. McGehee. Amayah was born with a port wine stain on the right side of her face. Before we were about to start treatments in New Orleans, the covid-19 pandemic hit, which bought our plans to a halt. During that time, we decided that Amayah can make her own decisions regarding her birthmark when she gets older and we tell strive to teach and show her the beauty that she possesses!
Growing up in a small town, I didn’t see people like me. In fact I hadn’t met anyone like me in person or online until I found ‘Birthmark Instagram’! I started sharing my story on Instagram to help others with their own confidence and so they would know they aren’t alone in their struggles. I shared enough that a media company reached out and wanted to share my story! Since the videos were published, they have reached millions of people across the globe bringing awareness to vascular birthmarks. It took me a long time to embrace what makes me different and I’m so happy I have.
I have a Port Wine stain on my chin, lip and cheek. I started laser treatments very young but stopped after I didn’t see changes to the size or color. However, Technology has improved and I am back at it! I had my second laser treatment this year, and I am seeing improvements! I had two “debulking” surgeries on my lip to decrease the size and create symmetry.
I have been making paintings of people with birthmarks which you can see on my Instagram page, @portwinestainpaintings! I am really happy to connect with people with birthmarks! Send me a DM if you want to chat. <3