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.
Director, VBF Global Ambassador Program
Hello! I was born with an AVM in my left foot. As my AVM has been progressively gotten worse, I have just had my first embolization done in August 2019 and soon to have another. Living with AVM comes with a lot of struggles but we can get through this and spread awareness!
When Lydia was born in 2013, doctors thought the redness on left side of her face was bruising caused because her twin brother had been on top of her during the birthing process. Six weeks later, a pediatric dermatologist officially diagnosed the mark as a port wine stain and her mother Kelly began scouring the internet for information and support. Lydia started treatments at 3 months old and began being monitored for Sturge Weber Syndrome. After discovering the VBF, Kelly created a network of Colorado port wine stain families that meet for play dates and share info. Lydia & Kelly believe awareness of vascular birthmarks leads to greater acceptance and they used an opportunity when a story about Lydia’s first day at preschool after a treatment went viral to connect with others all over the world. They look forward to raising even more awareness through the Ambassador program.
Lola B made me a Mom 5 years ago and has made me a stronger, better person ever since. Lola was born with a hand shaped port wine stain on the right side of her face. Despite the PWS encompassing her eyelid and the lateral part of her sclera, she has defied the odds thus far and has never had a seizure, abnormal EEG, or high intraocular pressure. She truly is one in a million. She has had 22 pulse dye laser treatments to date and is very well acclimated to the whole process, even holding her own mask to put herself to sleep. She is resilient, brave, smart, beautiful, charismatic and so much more. Any advice or support I am able to give to other families in similar situations would be an honor. Please feel free to reach out.
Hi! My name is Maddalena and I began laser treatment with Dr. Geronemus at 6months old up to 15 years old.
Although it was never easy being the little girl that didn’t look like others, or the girl who wore makeup at 12, I’ve e learned to embrace my birthmark!
With the VBF, I continue to learn the best way to deal with my particular situation and all opportunities to continue to treat this condition, for myself!
I first noticed my daughters strawberry birthmark on her stomach at 6 weeks. A month later, I noticed a small bump starting to grow her eyelid. Her pediatrician was uneducated about hemangiomas, so we didn’t do anything right away. Around 9 months, we noticed a bump on the side her face and after an ultrasound she had a internal hemangioma near her temple. She recently had an ultrasound done on her abdomen and she has another internal hemangioma. So she has a total of 5 types of hemangiomas. It has been quite a journey so far and I will continue to be an advocate for my daughter!
When my son was diagnosed with Angiokeratoma Circumscriptum he was almost a year old. It took us months of calling doctors, advocating to get him into Vascular clinics in our area. His birthmark is extremely rare, and only a small percentage of the population has this diagnosis.
As a mom it is easy to feel alone and wonder what is going to be the future for my child. While we are still trying to find a treatment plan and answers we are hoping to help others along the way not feel alone. Its important to us to be a voice for our son and so many others like him!
My name is Maille McNicholas and I was born with Klippel-Trenaunay Syndrome in 2006. At first, my parents did not know the reason for my birthmark, but thanks to the amazing physicians at the Vascular Anomalies Team at Children’s Hospital of Philadelphia (CHOP), we discovered my diagnosis and treatments that have helped me as I have grown.
I had my first surgery in 2015 with Dr. Srinivasan, who removed a large and painful varicosity from my leg. He then placed numerous coils to hopefully prevent more varicose veins from forming. I have truly been fortunate to have access to such an amazing team of physicians.
Today, I am a National Dance Champion and daring trapeze and aerial performer. I love dancing competitively with my Dance Team and working with the silks and static trapeze. I have also been involved with Pageants for five years, and have made it my platform to support children, like me, with Vascular Birthmarks. My goal is to raise awareness for vascular birthmarks, and serve as an Ambassador for the Vascular Birthmarks Foundation, and show that all children can live their dreams!
I am a certified personal trainer, group fitness and nutrition coach, and I hope to bring awareness to others about living with a birthmark – and help them with the ups and the downs. I’m also a writer in my spare time.
I was diagnosed with a venous malformation on my upper thigh at the age of six years old. I was never able to play as hard as the other kids due to the bruising ,swelling and pain in my leg. It’s devastating as a child when you’re stuck in the hospital while all the other kids are out having fun. I had sclerotherapy twice and neither time worked to fix the problem.
Fast forward a few years and my surgeon had decided to preform an embolization. I had been promised that I’d be back on my feet in a few weeks after surgery, but that wasn’t the case. The surgeon had ended up embolizing the wrong vein, killing my skin, muscle and tissue.
I’ve had 14 reconstructive surgeries in the span of six years consisting of skin grafts, tissue expanders, liposuction and fat grafting. My childhood was spent almost exclusively in a hospital, but this isn’t a sad story. My experiences have made me into the person I am today and my scars are what essentially make me, me. Beauty isn’t looking like a Barbie, beauty is our differences. So birthmarks, scars, stretch marks and even acne (the things society has deemed “ugly”) are what truly make us beautiful. My venous malformation has led me down a path that I didn’t think possible, and it means the world to me that I’m able to advocate for young girls like me and help them learn to love themselves inside and out.