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. However, 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 you identify a Parent or Adult Reps who has volunteered to provide personal support to other patients and families based on their own unique experiences.
To become a VBF Global Ambassador follow this link to register now or contact Scott Cupples, manager of the VBF Global Ambassador Program.
My name is Alana Dolcemascolo. I have a venous vascular malformation on my right arm. I had 17 sclerotherapy treatments with Dr. Robert Rosen in NYC. Also I volunteered at 2 of the VBF conferences in NYC. At the age of 6 I had my first surgery at Lenox Hill Hospital.
My name is Aleks and I was born with port wine stains on my back, bottom, both legs, and feet. I receive a lot of stares and comments from kids and adults when I wear shorts, skirts, and swimwear. I know I am always going to have stares and questions because my skin has port wine stains but I’ve learned to embrace my PWS and educate people when they have questions or comments. I’m not afraid to show my skin because I’m comfortable in the skin I’m in. I’m 13 years old now and my dream is to become a doctor. I’d love to talk with children who have questions or need someone to talk to.
I have lived with PWS for all my life. I have suffered through depression because of it and many other factors. I’m now working on my passion at Culinary School in Kópavogur, Iceland.
Hi. I am a mother of two kids. The eldest has a lymphatic malformation for which she has had many procedures. With a few friends I started Stichting Benthe, a non profit foundation. I want to help VBF promote awareness!
Hello, my name is Aliccia. My 16 year old daughter Shellby was born with a venous vascular malformation in her soft pallet , cheek , and down her airway. We first found this when she was three months old and she had surgery for ear aches and placed tubes in both ears.
We were referred to Primary Children’s Hospital in Salt Lake City, Utah were she was diagnosed with a hemangioma. The doctor explained that the birthmark could be a malformation, which was confirmed when Shelly was four. She gone on to receive eleven ear tube replacements, and also has been performing sclerotherapy at the Phoenix Children’s Hospital. I try to be a solid, strong and understanding parent but I have had my sad, confused, and angry days as well. I know that my daughter is the strongest, most amazing kid I have ever had the privledge to be around. We try to find any and all information and assistance on anything associated with these birthmarks so that Shellby can live an informed life with a vascular anomaly. Thank You.
Please see Lola’s Hemangioma Story which I previously submitted to Stories of Hope.
I was born with a facial port wine stain (and Sturge-Weber) all over my face and all over my body. With this I also suffer from Rhynauds disease in my right hand. Since being a baby I have had a lot of Lazer treatment on my face to reduce the redness. At age 12 I started to wear makeup to cover my port wine stain on my face as it gave me confidence issues, but camouflage was so heavy and cakey that I decided to start using “normal” drugstore makeup to help cover the redness. I found a technique and makeup brands which I like so then decided to create a instagram account to help out others who struggle with confidence issues abd help them achieve perfect coverage of their birthmarks.
My baby was born with a hemangioma in her mouth and nose. When she was a week old she started ulceration. At that moment, we started to look for help. Sadly, we couldn’t find a doctor in our country who could treat her. She took propranolol, atenolol, timolol and she received laser. Nothing worked early on, so we started to look for options on the internet which is where we found Dr Linda. She told us to contact baby face foundation. After a year of waiting, they took us to New York and Dr. Waner and Dr. Warren made the reconstructive surgery for my baby. We found angels in this journey that have changed my baby’s life and we can’t be more thankful for this opportunity to spread awareness!
I was born in Venezuela, I was diagnosed with a hemangioma and was told we should wait until I turned 7 years old because it was supposed to disappear. However, that never happened. So I began treatment very late, and due to inexperienced doctors I almost lost my life when I was 7 years old. After this experience, doctors recommended that my parents to take me out of the country and see vascular anomalies specialists, so we came to Boston. It has been a long process with lots of procedures, but God has been great, and this experience has made me strong. Otherwise, I am a grateful women, I’m a violinist, I speak Spanish, English, Portugués, as well as sign language. I went to Med School for 4 years in my country, I didn’t finish because I move to the US, but at some point I would love to continue studying.
I was born with a lymphatic malformation/hemangioma on my left hip. I had two pretty invasive surgeries as a baby and three more between the ages of 10 and 25. Thankfully, I never really have had many complications over the years. I’m now in my 40’s, have had two children and am an avid runner. I’ve completed over 20 half marathons and a full marathon all with a lymphatic malformation/hemangioma the covers my entire left hip.
