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 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!
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 name is Andrew Jenkins, and I have a port wine stain (Capillary Malformation), on my right cheek. It was looked at regularly until I was nine-years-old, I saw a plastic surgeon at Gloucester Royal Hospital, named Mr. Clive Reid. He intended to do a skin graft on my birthmark but decided against it because of the location, and we decided to put my name forward for laser treatment. In November 1992, I received a letter from a Mr. J M Kenealy from Frenchay Hospital in Bristol, offering me some laser treatment and offering a summary of how it works. I had a test patch done on my left arm and had no adverse reactions, so we decided to go ahead with the treatment.
I have a large birthmark that makes me stand out and I love that about myself. Growing up I dealt with bullying, insecurity, anger, and depression. I still deal with anxiety when I am in public but the more I accept and learn to love myself, the more it disappears. I did laser treatments when I was younger but realized I was trying to get rid of it to make others feel more comfortable. It has taken time, but I love who I am, and I love my life. I am an active presence on social media to spread awareness of birthmarks and break the stereotypes of beauty. I also work as an accountant, and I am also a former opera singer. I am pursuing my CPA and always pushing myself past my comfort zone. I have PWS but PWS doesn’t own me.
Our daughter Savannah is 2 years old and she was born with Port Wine Stains on roughly 80% of her body. At first it was very overwhelming because we didn’t know anything about these types of birthmarks or the other issues that they can cause. Through research online, our specialists and other parents we have been able to gain a better understanding of what Port Wine Stains are and what other things can be associated with them. We are still learning, but are hopeful that we can spread awareness and are here to support other parents.
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.
I grew up in the late 70’s and all 80’s with no treatment options and most doctors not knowing what a vascular birthmark or Sturge-Weber Syndrome was, or how to treat it. I was able to have some laser treatments in the early 90’s to help with the skin lumping and swelling. I had about 10 treatments over a 5 year span. My Sturge-Weber Syndrome also has caused glaucoma in right eye and I suffer from seizures. I’m married now with a son and Sturge-Weber Syndrome was not hereditary. Still going strong!
I was born with a large Port Wine Stain birthmark on my face. I also have a rare neurological condition called Sturge Weber Syndrome.
Growing up with these conditions brought many challenges, such as extreme surgeries, and learning to accept and love myself as I am. Yet, I haven’t let these struggles stop me and I have accomplished many goals including getting married and becoming a mother. One of my greatest achievements has been becoming a Global Ambassador for the Vascular Birthmarks Foundation. I actively advocate for individuals born with physical disabilities and facial differences.
Hi! I’m Danielle Keasling and my daughter, Violet was born with a PWS on her chin, both cheeks, right eyelid, forehead, and scalp. When she was born we were initially told it was bruising from birth. We we’re lucky to have access to wonderful pediatricians who knew about port-wine stains and could refer us to specialists. Because of the location of her port-wine stain, Violet is at risk for Sturge-Weber as well. We have learned so much thanks to VBF and other families in the birthmark community. We want to pay it forward and be there for anyone who needs support like we did! We love advocating and educating about port-wine stains and Sturge Weber.