The Vascular Birthmarks Foundation

Dr. Linda Rozell-Shannon, PhD President and Founder

VBF Global Ambassadors are a global network of advocates who work together with VBF to build awareness of vascular birthmarks and funnel support to every corner of the birthmarks communities. In most cases, these are not medical professionals. Many are an adult who has or had a vascular birthmark or who has a loved one with a vascular birthmark. In the directory below, you’ll learn more about their personal stories.

Search this page to find someone local – or with whom you’d like to connect – to learn more about:

  • Physicians in your area who can help to medically manage vascular birthmark cases
  • Their experience living with a vascular birthmark
  • VBF’s Day/Month of Awareness, Put on Your Birthmark, Buddy Booby Read-Along, Ask/Accept anti-bullying, and other birthmark advocacy and awareness programs
  • Fundraising events in support of VBF – create a Birthday Fundraiser and get some awesome VBF Global Ambassador swag!
  • And much more!

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.

NEWSLETTERS

AWARENESS

RESOURCES

CONTACT

  • Want to learn more about the VBF Global Ambassadors? For any questions or feedback, please contact:

Scott Cupples
Director, VBF Global Ambassador Program
ambassador@birthmark.org

Search Our Ambassadors

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Kris Kreis, United States (US), Virginia

I might be the only person in the world that is ok with wearing these COVID-19 masks. I’ve had a year of not constantly being stared at or asked if I got punched in the face or burned. I am fortunate to have not suffered any major effects of SWS. The only pressing medical condition for me is my Glaucoma which is causing loss of eye site in my right eye. Thankfully I had wonderful parents who made me understand that it isn’t looks that makes a person who they are but it’s what really is on the inside that counts.

Lauren Sheehan, United States (US), Illinois

Our family welcomed our sweet daughter, Reagan, into the world in September 2014. From this moment on, The Sheehan Family has immersed themselves into the birthmark community. Having attended the annual VBF conferences, participating in online Facebook chats, managing the network of providers in the Chicagoland area and hosting numerous fundraisers to support VBF. The Sheehan’s dedicate themselves to supporting all families who have children with a Vascular Birthmark.

Lydia & Kelly Bossley, United States (US), Colorado

When Lydia was born in 2013, doctors thought the redness on left side of her face was bruising caused because her twin brother had been on top of her during the birthing process. Six weeks later, a pediatric dermatologist officially diagnosed the mark as a port wine stain and her mother Kelly began scouring the internet for information and support. Lydia started treatments at 3 months old and began being monitored for Sturge Weber Syndrome. After discovering the VBF, Kelly created a network of Colorado port wine stain families that meet for play dates and share info. Lydia & Kelly believe awareness of vascular birthmarks leads to greater acceptance and they used an opportunity when a story about Lydia’s first day at preschool after a treatment went viral to connect with others all over the world. They look forward to raising even more awareness through the Ambassador program.

https://www.facebook.com/kelly.bossley

Maria “Cathy” Hernandez, United States (US), Utah

On June 17, 2020 I was blessed with our beautiful Xander. His birthmark was not a conversational piece during our hospital stay (maybe due to our COVID story) but his siblings loved it and said he was Prince Zuko (Last Air Bender reference).

On our 2 month check up appointment, I mentioned a pump on his head on the same side as his PWS. A CT scan later we were informed that our baby boy was diagnosed with Sturge-Weber Syndrome. As you can imagine, confusion set in but here we are learning and supporting just the same way you all are.

Meghan Curley, United States (US), New York

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!

Melissa Chen, Canada

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.

Molly Broadus, United States (US), Kentucky

Our daughter Hadley is 6 months old. When she was born her right eye was swollen shut and had red markings on her eye lid and forehead, we were told it was just bruising and the way she was positioned. The next day a neonatal doctor informed us about Sturge Weber Syndrome and that her eye could possibly be bulging due to glaucoma. Hadley was 3 days old when she arrived at Cincinnati Children’s Hospital, I will never forget sobbing in the exam chair as her ophthalmologist tried examining her swollen eye. He believed that she had a hemangioma in her eyelid and her eye looked healthy with slight pressure. Days later she was in surgery for a biopsy and about 2 months ago she received an orbitonomy to remove as much of the mass as they could. Hadley has a rare vascular tumor that expanded from her eyelid all the way to her skull along with the most beautiful port wine stain. She continues to be monitored by doctors and will start her laser treatments soon. As of today she does not have a clear diagnosis.

Before Hadley I had never seen or noticed a port wine stain nor heard of the term hemangioma. I currently teach first grade and taught special education prior. I received my Masters Degree in moderate and severe disabilities, not once heard about Sturge Weber Syndrome. My world has changed for the better and am blessed with the sweetest girl. The first few months with Hadley I felt alone and afraid. I am forever grateful for this foundation which has supported my family and I in so many ways.

Moran Barzam, Israel

My daughter was born with PWS in her right hand, back & chest. We started the laser treatment when she was 3 weeks old. When she was 2 months old, her right hand became bigger then her left hand and after some tests they told us that she has a lymphedema problem in here hand.

Morgan Arrowsmith, United States (US), Georgia

My name is Morgan I am 26 years old I’m from Georgia, and I have a port wine stain birthmark on the right side of my face. I also have SWS. I was diagnosed with SWS at 3months old.

Nicte Barragán, Mexico, Jalisco