VBF Global Ambassador logo

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

Search Our Ambassadors

Reset

Elizabeth Lorentz, United States, Texas

When Easton was born, the pediatrician identified the mark on his face as either a ‘stork bite’ or ‘Port Wine stain’ (PWS). We then saw our pediatrician and he said he believed it was a stork bite, however as time passed by it hasn’t lightened. So we all agreed we should find out if it is a PWS.

We went to an ophthalmologist first to rule out glaucoma, PWS increases the risk of glaucoma. Thankfully we’re all good there!

We then scheduled with a dermatologist who has confirmed he does have a PWS. We are in the process of scheduling his first laser treatment. The dermatologist has predicted we will do 8-9 treatments, one every 6-10 weeks.

PWS is an abnormal development of blood vessels, it can appear anywhere on the body. The reason why they laser a PWS is to break up the blood vessels so they don’t get larger as time goes on.

We’re also scheduled to see a neurologist in May, another risk with a PWS is Sturge Webber Syndrome (SWS).
As you can imagine we’re so sad and so scared for him, just knowing how uncomfortable and sad he will be during and after treatments.. As he gets older he’ll go under general anesthesia for his treatments.

Email this ambassador

Ellahe Haghani, United States, New York

I was born with a port wine stain covering the right half side of my face. My family tried to find any treatment they could for me, but we were unsuccessful, and the lesion was getting worse and worse every day. At age 28 my face became horribly disfigured and was still left untreated, until I miraculously found Doctor Milton Waner who saved my face and changed my whole life.

Email this ambassador

Emelie Steglich, Germany, None

Hi! My name is Emelie and I am a 20 year old university student from Germany.
My birthmark (port-wine stain) is located on my left temple, so it’s very visible.

I want to focus on my journey on becoming a young woman that is proud of her birthmark. Growing up I never felt the need to cover up my port-wine stain. I only started thinking about covering it as more and more people drew attention to it. School was when I truly realized that I look different.

Questions like “Did you ever think of covering it up?” or “Would you remove it if you could?” and all the stares in public put doubts in my mind about my appearance I never had before as a child. It took a lot of time and work to now being able to say that I am proud to have my birthmark, I love who I am and I wouldn’t change a thing. But those comments from the outside world and especially being exposed to social media as an early teen sparked a lot of negative thoughts in me. However I eventually got over those doubts, I think it was a combination of embracing who I am. and starting to like that I was a little different. Don’t get me wrong, I do still get uncomfortable when I am out it public and notice people staring at me but I don’t let that affect me anymore. To me beauty is about being comfortable in your own skin, it’s about loving and accepting who you are. And I believe with the right mindset everyone can find the beauty in themselves.

That is why I want to spread awareness on this subject, so that young girls and boys who may hear the thinks I heard growing up won’t have to struggle with their self-image, because they know they are not alone. I want them to feel good about themselves and focus on things that are more important than worrying about their appearance. And whether or not you choose to cover up your birthmark, it’s about feeling comfortable in your skin and I wish that more people would.

Email this ambassador

Emily Carruba, United States, North Carolina

After years of pregnancy loss I had to advocate for reproductive care that brought us our beautiful daughter who has 2 hemangiomas, one below her eye. That experience has given me the passion to spread education and awareness on infantile hemangioma care.

Email this ambassador

Emma Albert, United States, New York

Hi my name is Emma and I am 17 years old. I was born with a venous malformation of my left leg as well as KTS that spans from my toes all the way up to upper thigh and hip. However, my condition has become more complex over the years as I have developed a flexion contracture in my left knee which has left me wheelchair-bound for long distances, in addition to blood clotting issues that have led to me giving myself blood thinning shots twice a day.

Over the years I have had upwards of 30 sclerotherapy treatments with Dr. Rosen, a debulking surgery with Dr. Waner, and regular check-in appointments with Dr. Blei as well. Despite all the time my treatments take up, I don’t let that stop me from pursuing my passions and staying active. I am an avid athlete both in school where I am soon to be a captain of the varsity track team and out of school where I am apart of the New York Road Runners Youth Wheelchair Training Program.

Not only do I participate in NYRR programs, I am also a youth ambassador alumni and I have served as a Grand Marshal for the 2017 TCS NYC Marathon. Aside from wheelchair racing, I am also a mentor for a non-profit called Stay-Focused which certifies teens with disabilities in scuba diving. I am involved with various clubs and initiatives at my school, specifically ones related to mental health and advocacy.

Without my vascular malformation, I never would have been immersed in the amazing culture and family of the Vascular Birthmarks Foundation, or been provided with many of the opportunities I have had throughout my lifetime. I never would have attended the VBF Conference where I met several lifelong friends who I consider to be my “KT Sisters”, so for that, I am forever grateful. Thank you VBF for all you have done for me and all you continue to do for people living with vascular birthmarks, malformations, and anomalies.

Email this ambassador

Emma Fretwell, United Kingdom, None

Lola was born with a quiet visable Kasposiform hemagioendothelioma with  Kasabach merritt. Sadly this was misdiagnoised twice as a hemangioma & and vascular malformation. She is under sheffield childrens hospital & great ormand street. Currently on no treatment but treated kms with steriods & 23 doses of vincristine. We have lola facebook group, which we help support & try get advice for people all over the world to help. Also just offering support.

Email this ambassador

Emma Fretwell, United Kingdom, None

Lola was born with a quite visible Kaposiform hemangioendothelioma with Kasabach-Merritt Syndrome. Sadly this was misdiagnosed twice as a hemangioma & a vascular malformation. She is under care at Sheffield Children’s hospital. Currently, she is receiving no treatment for her KHS, but her KMS is treated with steroids & 23 doses (to date) of vincristine. We have Lola Facebook group, which we hope will help support people all over the world. Also, as an Ambassador we are just here offering support.

Email this ambassador

Endah Muryati, Indonesia, None

My name endah of Indonesia. 35 years I received the condition of the with PWS. First, when small I just received a scorn from the shelter me. Just support my father and my mother, as well as a large family I made my able to stand up until today. I am proud and still grateful to God with PWS it because I think not everyone can be like me. This is a gift of of God. To prove I could and able to be more of them all the perfect, I choose the determination migrated to the capital. Here I found the back of the people who think up and accept all advantages and lack of me. And I could share of with pupils me. Being a teacher is the choice of my life.

Email this ambassador

Eric Pixley, United States, Connecticut

My name is Eric, I was born with a PWS. Growing up I faced bullies, depression, fear, and insecurities – but that all changed with time. Once I accepted who I was the rest was history. I used those hard times to become who I am today. Today I use music to help spread my message of strength, love and confidence. I am dedicated to my community by providing school supplies to the youth and winter wear to the homeless. My hand is always out to anyone who needs it! I run a social media page “Port Wine & Proud” supports you!

Email this ambassador

Erica Killen, United States, South Carolina

Lauri was born on September 24, 2018! We ended up in the hospital when Lauri was just 6 weeks old & was there for 5 1/2 months. My little girl was born with a very narrow airway which resulted in a trach after 3 different dilations. She has that until further notice but should soon be getting it out! Her Port Wine Stain is a different story as it’s gotten a lot lighter the older she has gotten…although her hemangioma around her mouth is progressing. It doesn’t stop her, she is so full of life! It has been an amazing journey watching her learn & push through whatever she comes her way! She is a true inspiration to myself & everyone she comes in contact with!!

Email this ambassador
icon-angle icon-bars icon-times