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
First time mom never knew or heard of vascual birthmarks until she was born. Already scared enough of the delivery process had to to have a c section then having my daughter be deliverd and not being able to see her for more than 10 seconds, as they took her down to NICU for what they said was some sort of a possible rash. it was all very scary amd emotional and i would love to help out other new moms and eveeyone else out there that doent know what a vascular bm is!
I’m 21, and live in North Wales. I was born with the Portwine Stain on the left side of my body. Since I was a baby I have had numerous of laser therapy sessions in Alder Hey Children Hospital in Liverpool which helped to fade out the birthmark until I was 18, then I was transferred to Whiston Hospital in Prescot, and then to St Helens Hospital which I now attend every three months. I’m happy with the progress, even though I know the Portwine Stain will never dissapear.
My daughter Alysa was born in October 2017 after a healthy pregnancy and uncomplicated delivery. The doctor thought Alysa had a bruise from her birth but soon after we knew it was not a bruise. Our journey into vascular birthmarks began.
At 1 week old Alysa was diagnosed with a port wine stain. She had her first check of her eyes for signs of glaucoma at 2 weeks old, and we declined an MRI in favor of clinical monitoring for SWS due to the location of her PWS. Alysa’s port wine stain covers her left cheek, ear, and neck. She is monitored regularly for glaucoma and gets laser treatments in Kansas City.
Alysa doesn’t let anything bother her and proudly wears her “special spot” each day. She is a smart, happy, healthy, and silly little girl! I don’t know what we would do without her!
I was born with a PWS on my right cheek. Early on, I had to struggle with the scarce availability of dermatologists managing birthmarks in children. Therefore, it ignited an ever burning passion to pursue medicine and specialize in pediatric dermatology to ensure all children with birthmarks have access to latest information about treatment and management of various vascular malformations and birthmarks.
I was supported by members of VBF social community when I was going through my laser treatment and that is when I decided I will give back to it one day. I am on the first step right now, as I am doing my residency in pediatric and adolescent medicine at Mayo Clinic. Alongside, I want to contribute in promoting the work of VBF so everyone who has a birthmark feels supported and loved.
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.