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.
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.
Scott Cupples
Director, VBF Global Ambassador Program
ambassador@birthmark.org
Hello! My name is Abby; my daughter Edith was born October 2019 with what initially thought was a PWS, but ended up being a Hemangioma on the left side of her face. It started to show about a week to two weeks after birth. She was admitted for 5 days at 3 weeks of age to start treating the Hemangioma with propranolol. Along with her facial Hemangioma she also has PHACES. She has the PHA-E portion. She is being closely monitored due to her eye, but she also has a cavernoma/Hemangioma in the occipitapal lobe of her brain that could potentially affect her vision in some way, or it might not. We are located in the Twin Cities in Minnesota. My husband Marcus (Edith’s father) and I also have a 2.5 year old son, Marshall who adores his baby sister most of the time and two dogs!
Hi my name is Abigail Scruggs or Abby Jo for short. I am 16 years old and have a Port Wine Stain that covers the left side of my face, from my lower lid down to my chest. It wraps around my neck and scalp in the back of my head. It crosses the mid-line at my lip down to my chest. When I was born I was diagnosed with Sturge Webber Syndrome due to the placement of my birthmark. However, after several years and multiple MRI’s, that diagnosis was reversed due to no brain involvement. I have been having PDL treatments under GA since I was 6 months old, 5-7 times a year.
I have my eyes checked for glaucoma every six months, for the rest of my life. Although the treatments take up a lot of time, I don’t let it hold me back! I sing at several venues and multiple churches in my area. I play cello in the orchestra, piano, guitar, banjo, etc and take voice lessons at a local college. I have been in pageants for the last three years. I am in honors classes at school. I have been on the student council every year and am the president of my school Beta Club. I recently went to the South Carolina Beta Convention, ran for president and won! I will go to Nationals in TX this summer and run for the national presidency! I plan on getting into politics after college and eventually become the first female President of the United States!
As my Beta Presidential slogan says, Don’t Go With The Flow, Just Keep Swimming! No matter what life throws at you, don’t get swept away by the current! Just keep swimming, just keep going, you might just change the tide!
I was born in Canada & currently reside in the USA. I have a large PWS birthmark that covers my right shoulder & chest, arm, and hand. It’s always been a major part of my identity but it was not necessarily how I defined myself. I will always strive to be a positive role model for anyone born with a birthmark. Growing up looking “different” than everyone else gave me a special stance on kindness and I embody that principle in life. I have always felt like a champion for the underdog and to this day, always stand up for those being given a hard time.
I have a natural protectiveness for others who may also be perceived as being at a disadvantage for the way that they were born. A healthy attitude about oneself is everything and I’ve always embraced who I am and haven’t wanted to change my appearance. Kindness, through awareness, can and should start with you.
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!
I have a port wine stain above my lip which I’ve hidden most of my life. Although my birthmark is small, it’s caused my life to be very different. When I was a child I lost friends and felt like an outcast because of this little mark on my face. Kids would spread rumors about me and tell others that I was contagious.
Most of my birthmark is inside my mouth, so I was always scared of dentist visits or even smiling in front of people because I knew I would have to explain my birthmark every time. When I was 10, I began to cover my birthmark every day with makeup and never let people see it. I have not gone outside or put myself in view of other people without my birthmark covered for the past 12 years.
Recently, thanks to those I’ve met online in the vascular birthmark community, I’m now learning to become more comfortable with myself and with my birthmark. I’m sharing my asymmetrical smile unapologetically and I want to educate others about vascular birthmarks so that it won’t seem so strange or unknown to people anymore. I don’t want any other children to grow up feeling the way I did about my birthmark.
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.
