VBF Global Ambassadors are a global network of advocates who are working together with VBF to build awareness of vascular birthmarks and funnel support to every corner of the birthmarks community. In most cases, these are not medical professionals. Many are either themselves 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 story.
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.
Director, VBF Global Ambassador Program
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.
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.
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.
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.
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.
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!
Martin was born with faint, pink marks that we were told were due to birth and would fade. They didn’t fade; they got brighter and darker and became raised, it covered his back, half of his chest, full arm and side of his head. He was misdiagnosed and when his skin started to open with sores we took him to the ER where many tests were done and in a couple of days was diagnosed with PHACE Syndrome. He was two months old, we were terrified, something we were told would not be any harm was actually internally affecting him and was potentially life threatening as they were unsure he was getting enough blood supply with the narrowing of his arteries. He started taking propranolol to fade the hemangioma and we became experts at bandaging our months old baby so his sores would close and not become infected. His few physical delays didn’t stop him as he is now a four-nado who loves to run, play and sing. He is no longer on propranolol but is on a daily aspirin as a blood thinner for his narrowed arteries and he is still at risk of stroke. He will continue to have many annual tests done and our journey continues as he starts school this year. We are truly blessed to have him and we adore his beautiful PHACE and soul.
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.