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 Megan, and I have 2 Port Wine Stains on my left hand. It kind of looks like someone put a reddish-purple lipstick on and rubbed it all over the back of my hand. Over the years, I’ve had people ask me questions, or be freaked out by my birthmarks.
My goal is to normalize vascular birthmarks and spread awareness about these special types of birthmarks. As a teen, I feel that using VBF and my social media platforms is an awesome way to educate my peers about vascular birthmarks.
I am 43 years old and was born with a PWS. I had my first seizure at 16 months old. My parents were told by our pediatrician to treat me as normal as possible so, that is how I was treated. I did have some assistance in math and reading in grammar school. I graduated from HS in 1993 and have a BA in Elementary English Education and a minor in Religious Studies. I have been working in the disability field for a state agency for almost 17 years. Feel free to ask questions!
I was born with a large PWS on my face, neck, scalp, shoulder, and back. I’ve previously had 7 surgeries before finding the Vascular Birthmark Foundation. In October of 2018 I had my first treatment with Dr B in NYC. I’ve been married to my husband Malcham for 21 years and we have 7 beautiful children. I get so excited about helping others find VBF because of all that I have learned from this wonderful organization over the years. I can’t wait to be a bigger part of it!
Hi Everyone! I’m Melissa Chen, and I have a capillary malformation, otherwise known as a port-wine stain birthmark on the right half of my face.
Growing up with a facial difference, I assumed my birthmark was purely superficial until I noticed my face and upper right lip had swollen over the years, and the color changed from light pink to a deep red. I started laser treatments when I was 22 years old, and continued for a year. During my mid-20s, I was diagnosed with glaucoma in my right eye. It was devastating to find out that there could be a day when I lose my eyesight.
Professionally, I started my career as a web developer and designer. After being diagnosed with glaucoma, I was worried about my day-to-day life and career and how’d I be able to cope with the potential loss (or reduction) of my vision. It inspired me to pursue professional roles developing and designing web applications with “Accessibility-in-Mind” making sure that accessibility gets embedded at the core of every digital product.
Today, I work as a Digital Accessibility Specialist for a multi-billion dollar organization, contributing to developing the company’s Digital Accessibility Standards and leading the Enterprise Accessibility Program & Initiatives.
As a VBF Global Ambassador for the Vascular Birthmarks Foundation, I hope to raise awareness and help create barrier-free access to digital information.
I’m Mia. I was born with a PWS on the left side of my face, mommy and daddy were really scared. For my 3 days in the hospital I saw a neurologist, an ophthalmologist, and I even had an ultrasound of my brain! My first pulsed dye laser treatment was March 9th when I was a little over 3 weeks old! I had my second treatment May 4th and we are seeing great results. Treatments are a little scary but mommy and daddy make it better for me by being with me. When I grow up I want to teach everyone about PWS’s and show my journey!
I grew up in the San Francisco Bay Area and attended Johns Hopkins as a biochemistry major, graduating in 2019. I have a port wine stain birthmark that stretches from mid-calf to foot on my right leg. My birthmark has served both as an inspiration to my personal growth and intellectual interests, as well as at one point, a barrier to my self-esteem.
Throughout my childhood, I was embarrassed to reveal my birthmark to peers, having been hurt before by curious stares and intrusive questions. At the same time, during yearly visits to dermatologists I developed a fascination with the biology and medical research behind my condition. When I was kid, I used to dream of a community to help me overcome stigma and understand barriers to treatment accessibility.
I’m dedicated to increasing awareness of this amazing community — now at the cusp of attending medical school, I hope to help future patients and their families make use of VBF’s benefits and people, while using my education to improve holistic treatments for vascular birthmarks.
Michelle Daga is an Australian journalist, freelance writer, nutritionist, holistic pregnancy care practitioner and birth activist. And she happens to have a facial Port Wine Stain birthmark. Michelle realised she was different from a young age and was subjected to bullying throughout her primary and high school years.
Determined to complete her education and pursue her dream of writing, Michelle finished her schooling through distance education before landing her dream job as a cadet journalist. Since then, Michelle’s career has evolved and she has created several businesses using her own life experiences to help and inspire others.
Michelle also has coeliac disease and enjoys developing gluten free vegan recipes, supporting others with going gluten free, advocating for birthing rights, and spending time with her husband and infant son. As a survivor of bullying and domestic violence, Michelle is passionate about her role as a VBF Global Ambassador, sharing her story to support other people living with birthmarks, and raise awareness and acceptance in the global community.
Hi everyone! My name is Michelle and I am 23 years old. I reside in Monterey Park, CA and am a recent graduate at UC Riverside. I have Arteriovenous Malformation (AVM) on the right side of my face. Before VBF, I was misdiagnosed, have been through numerous unsuccessful and traumatizing surgeries as a kid, and was hopeless. Frustrated with the cycle of doctors turning me away, referring me to other doctors and giving me and my family no clear direction in treating me, I neglected treatment for 7 years. It wasn’t until 2016 when I came across VBF. I am so grateful for the transformative surgeries Dr. Waner, Dr. O, and Dr. Berenstein have done for me over the last 3 years. Now that I am more knowledgeable about the available resources and treatments, I want to spread awareness to anyone with a vascular birthmark and provide a positive platform of acceptance, embracing differences, and educating others about vascular birthmarks through my experience living with one.
My daughter Savannah developed three Hemangioma’s about 2 weeks after she was born. At her one week appointment my doctor told me not to worry about them and that the one on her head was just an angels kiss. A few days later they grew and quickly. She now regularly meets with a pediatric dermatologist and receives both oral and topical beta blockers. I’m so thankful I found so many great resources and support channels I want to be able to help others who don’t know where to look.
Mother of a beautiful girl with a PWS on her left side of the face. At the beginning of our journey nobody knew what was on her face, we went to so many medical examinations with no luck. Thanks to VBF and support groups on Facebook, we found Dr. Linda and learned everything about our birthmark, and now we are seeing Dr. Geronemus in New York and finally we are satisfied that we are doing the best for our child. As a parent who did not know that PWS exist, we are very grateful and it is very important for us to share awareness.