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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 (VBARS) all while cultivating a supportive community. This network is comprised of people living with a vascular birthmark, as well as friends and family members who have a loved one affected by VBARS. 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 and spreading awareness about VBARS, while supporting the mission of the VBF. Our committees consist of Regional & Virtual Meet Ups, Awareness, Fundraising, Ask/Accept Anti-Bullying, and the Parent Advocacy Network. The VBF Global Ambassador Program supports the VBF mission, provides helpful resources to our network, and amplifies Dr. Linda Rozell-Shannon’s vision.

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.

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
scott@birthmark.org

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Leah Phin, United Kingdom, None

My name is Leah and I have a 15 month old son called Harry. When he was born there was no sign of any birth mark but when he was around 4 weeks old a little red spot appeared and after that it’s just grew rapidly into the infantile hemangioma.

We are awaiting treatment to start Propranolol and hoping for success.

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Lenka Gotart, Czech Republic, None

My name is Lenka, I was born in Czech Republic in 1984 with PWS on my right side of my face. Growing up I faced bullies, but I became confident women and I would like to inspire others. I am ready to run a Czech Facebook page for adults as we only have only pages for children and parents. I would like to bring more awareness here in Czech Republic and I am ready to help people with the similar problems in any way all over the world.

https://www.facebook.com/lenka.miksikova

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Liliana Hinojos Madrid, United States, New York

Hi all! My name is Lili. I was born with a port-wine stain that covers a good portion of the right side of my face. My birthmark has always been a big part of my identity and has allowed me to have a unique perspective on what being “different” is like. As a result, I have always had an inclination to stand up for others that are experiencing challenging situations. I’ve always been happy to educate others on port-wine stains, and after finding the Vascular Birthmarks Foundation, doing so has become a breeze. I look forward to connecting and welcoming you to our community.

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Lindsay Gallagher, United States, Pennsylvania

My daughter was diagnosed with bearded distribution hemangioma around 4-5 weeks old and has been doing treatment since. She was tested extensively for PHACES and has a small spot in her throat to accompany the facial hemangiomas. Treatment has done wonders but we had known nothing about this condition prior to diagnosis. I would like to help others gain awareness and support.

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London and Casey Roby, United States, Texas

My daughter London and I have joined the Ambassador program together and here is her story! My name is London and I am 9 years old. I was born with a hemangioma directly underneath and to the corner of my right eye. The placement and the speed in which it was growing, encouraged my Dr and parents to start propranolol and later laser treatments. After 7 laser surgeries the hemangioma is gone. A scar remains and it does not bother me. It reminds me of my amazing story every day. I love it. My Mom, Casey, also was born with a strawberry hemangioma on the top of her head. It is gone now and they did not have to do any surgeries to have it removed. I spread awareness at my school with the Buddy Booby Book, wear your mark/heart day, as well as sharing my stories with everybody I can. I’d love to become an ambassador and help other kids like me get through a difficult time with their hemangioma or ot

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Lordan Ljubenkov, Croatia, None

Our baby boy has a PWS. My wife Tina and I, we have studied a lot of analysis and we’re aware how little the public knows about Port-Wine Stains.

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Loren Puchalski, United States, Tennessee

I have a Venous Malformation on my left arm. I have had 14 surgeries on my arm in New York by Dr. Rosen. I had my first surgery when I was 9 years old in 2016. I have been a dancer all my life, but having a Venous Malformation as a dancer is a challenge, but if it weren’t for the The Vascular Birthmark Foundation introducing me to Dr. Rosen, I would not be able to dance.

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Lori Kindberg, United States, California

My Daughter was correctly diagnosed with a VM at the age of 10. It is intramuscular as well in fatty tissue. She has had sclerotherapy twice so far. The blood clots that she has from her VM are very painful especially from puberty and extraneous exercise. Her VM is located on her gluteus and is almost covering the whole right side of her buttocks. It’s very lumpy and hot to the touch all the time. She has a hard time dealing with the stares that other people give her, even though it is covered in clothing. It’s hard as a mother to see my child worry about what people say and the stares, it’s even harder to know that she is constantly in pain and I can’t do anything to help ( she hates taking pain killers, so she just deals with the pain).

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Louanne Trudeau, Canada, None

Hello, my name is Louanne. My life changed for the better 4 years ago when I gave birth to a beautiful baby girl who happened to have a birthmark on her cheek and chin. It’s been quite the learning experience throughout but I’ve since learned how to be a good advocate for my child. It’s also given me the power to help others who may be experiencing similar challenges associated with birthmarks; choosing the proper laser treatment, finding ressources, finding knowledgeable doctors, anesthesia concerns, self esteem concerns, addressing curious sometimes insentive people and the list goes on. With the help of the foundation I’ve become very comfortable with the decisions we’ve made for our daughter. If I can help you in any way, please feel free to contact me. I’d be happy to answer your questions to the best of my knowledge in English or en francais!

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Luis Casanova, Ecuador, None

My name is Luis Casanova, and I am vascular Surgeon in Guayaquil, Ecuador. My wife has a AVM in the mouth. I have information that can help.

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