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 daughter Stephanie was born with a lymphatic vascular malformation on her right eye (eyelid and behind the eye). After posting on social media, Dr. Linda of the Vascular Birthmarks Foundation reached out to help. Through incredible intervention of Dr. Linda, Stephanie has received three life-changing operations from top specialists in New York. Our family is forever grateful for VBF.
I’ve grown up listening to the whispers and assumptions and the questions. I was used to being laughed at and feeling like an outcast. I saw having a difference as a negative thing until I tried to cover my birthmark with makeup. I left the store in tears because I didn’t recognize myself. It took me until the summer before 8th grade to realize that my birthmark is a part of me that makes me who I am. It was on that day I decided to always let my true color shine through.
Now I am 16 and an aspiring musician who wants to show that world that our idea or normal and perfect is an illusion. Having a difference can’t stop you from chasing your dreams and reaching them. We were all made the way we are for a reason, and it’s beautiful. That’s the message I want everyone to hear.
Hi everyone! My name is Gabriella Lopez. I was born with a predominant Hemangioma on the left side of my face spanning from the top of my head down to my lower cheek. I underwent my first laser treatment at 1 month old and had 10 more up until the age of 13. Growing up with a facial vascular birthmark certainly had its challenges, from being bullied to withstanding countless stares and points from children and adults, I learned at an early age what it was like to be singled out. However, now at the age of 26, I find my birthmark to be a blessing. It has made me who I am today, and I could not be more grateful for that.
Coming from a different background you hold so many unique experiences, and it’s important to remind yourself just how valuable and powerful those experiences are and that with any hardship or obstacle you have encountered, you are capable and can conquer that much more. As a global ambassador I hope to spread awareness on vascular birthmarks and advocate for those with birthmarks as they learn to love and embrace who they are.
My name is Gabrielle, or “Gabby”. I have an untreated port wine stain covering my right arm and hand. I’m also a sucker for humor, so my favorite thing about my PWS has to be the irony of it. I’ll go days at a time without even thinking about my birthmark. I’ll notice it on my hand when I reach for something, and it’s completely casual. When I describe myself, my birthmark doesn’t come to mind. But there isn’t a day that goes by where others don’t notice it. When others describe me, it’s probably the first thing that comes to mind. I mean, they don’t call me “the girl with the thing on her arm” because I have a great smile.
How funny is that? What makes me stand out to others doesn’t stand out to me, and that is why VBF is important to me. I want to raise awareness and help support other children and teens living with a vascular birthmark, because I hope that one day my birthmark isn’t ironic. Of course, then I’ll have to find a new favorite thing about my port wine stain.
I’m 16 and was born with a port wine stain that covers the majority of my right leg, and also my upper and lower back. Dr. Roy Geronemus performed my laser surgery, which began when I was three weeks old and continued until I was four. Once after treatment, teachers thought my bruising was perhaps a contagious disease, and they isolated me from the other children. When I reached junior high, I was bullied over my birthmark and realized that not everyone sees my appearance the way my parents see it: beautiful. My passion for dance has placed me in numerous situations where I have to explain my condition. When people stare, I can smile back and inform them about my birthmark and the symptoms related to it. I want to be able to spread awareness so we can stop the stares and help kids feel comfortable in their skin.
My name is Rachel Hudson and my 6 year old daughter Hadlee was born with a Port Wine Stain on her left eye and forehead. Hadlee had her 5th laser treatment at the 2018 VBF conference in NYC and has had amazing results. We were misinformed about birthmarks when she was born and found VBF through research. When Hadlee was born, we were told her Birthmark would disappear and not to worry. The VBF informed us bout treatments and the chance of developing SEO. Hadlee received ultrasounds and sees an ophthalmologist regularly to be sure she is in good health. The VBF is such a huge part in Hadlee’s health and confidence. Hadlee already knows enough to explain what a PWS is and why she needs treatments. She loves animals, reading, school, and making new friends. We are so grateful for the VBF and everything they do for us.
My daughter Della has 5 hemangiomas, one with a possible tethered cord as a result. I’ve had to learn quickly how to manage her birthmarks, specialty doctors appointments, and educating those around her that she’s a perfectly healthy, happy child!
I was born with a venous malformation that was misdiagnosed as a hemangioma due to the limited knowledge at the time. My parents researched and got the best treatment offered at the time. My parents helped me to deal with the bullying and develop strong self-esteem. As a result, my birthmark does not define me, it’s just one part of the whole ‘me’. Fast forward to age 21 where my mom discovered new treatment options with Drs. Geronemus and Berenstein at NYC at the time. I had an experimental sclerotherapy surgery. It was intense, so I put it on the back burner. 10 years later my mom saw a tv piece on Dr. Waner and his work. I started treatment with Dr. Waner and Berenstein and had a tissue excision and sclerotherapy surgery along with several laser surgeries. I’ve joined the VBF Ambassador program to provide support, whether peer or for families. I truly feel that our uniqueness makes us memorable!
I was diagnosed with blue rubber bleb nevus syndrome at 18 months old. Since, I have a right parieto-occipital AVM that bled before I was born. I also have 3 venous malformations on my left leg and toes. 2 paraspinal muscle lesions and a lesion on my right retina.
I am a young teenager who is always seeking more knowledge, and who happens to have been born with a Port Wine Stain on my right cheek. Already, I’ve learned so much about my Port Wine Stain and it’s effect on my world, especially in an environment full of teenagers and younger kids. Although I am still young and know I have much to learn, I hope to share my own experiences about growing up with a vascular birthmark with other kids and teenagers. I am proud of my Port Wine Stain. It has helped shape me into who I am today!