The Vascular Birthmarks Foundation
Dr. Linda Rozell-Shannon, PhD President and Founder
Dr. Linda Rozell-Shannon, PhD President and Founder
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
I have a PWS on my face neck and scalp. I have had many laser surgery over the years. The latest has been really successful.
My name is Daniel Troy. I am a United States Air Force Veteran. I have a Port Wine Stain on my right cheek and under my eye. I am 35 years old and live in Guntersville Al.
Hello, I am Daniela. I went all my life trying to receive a proper diagnosis, but recently discovered that I have Klippel Trenaunay Syndrome. It is definitely a constant struggle, but I do my best to manage my condition, day by day.
I am British, and currently residing in the USA just outside Washington DC. I am a mother of 3 girls, twins currently 10 and a 7 year old. I was born with a large birthmark and Venous Malformation on my right leg, it covers from my lower back to my ankle. I found out just 3 years ago, that I had KTS.
I lived most of my life trying to cover this and recently have decided that I will no longer hide behind jeans when everyone is wearing shorts. I wish I has found this confidence and this entire support community when I was much younger (I am just about to turn 38) and would love to help anyone else in a similar situation.
Hi! I’m Danielle Keasling and my daughter, Violet was born with a PWS on her chin, both cheeks, right eyelid, forehead, and scalp. When she was born we were initially told it was bruising from birth. We we’re lucky to have access to wonderful pediatricians who knew about port-wine stains and could refer us to specialists. Because of the location of her port-wine stain, Violet is at risk for Sturge-Weber as well. We have learned so much thanks to VBF and other families in the birthmark community. We want to pay it forward and be there for anyone who needs support like we did! We love advocating and educating about port-wine stains and Sturge Weber.
My name is Danielle and I was born with an Anterio-Vascular Malformation that runs from my right knee up to my hip. I have been treated by Dr. Robert Rosen out of Lennox Hill Hospital in NYC since I was 15 years old. I have had around 9 surgeries with Dr. Rosen. In addition, because of my AVM, I had degenerative arthritis of the right knee and received a total right knee replacement at 23 years old.
I recently moved to Los Angeles from NYC and I am looking for events, support groups, etc to share my story and relate to others.
In addition, I am certified in Pilates and focus on training clients privately with Chronic Pain, Sports Injury, etc. as this is all something I can highly relate to. www.PilatesByDanielle.com
While my AVM and TKR has caused extreme pain throughout my life, I have become a stronger person because of it. I did not let my pain, swelling, or hospital stays keep me from running a 5k race, hiking with my labradoodle, and practicing/ training pilates every week.
Please reach out as I would love to connect with each and everyone one of you!
Our daughter was born with Port Wine Stains covering half of her face and back. With little knowledge of what Port Wine Stains were, we never expected a birthmark would present with so many health concerns. She was also diagnosed with Sturge-Weber Type II. My goal is to educate those around Rockford, Illinois area, as well as to provide support to parents and families also experiencing similar situation. See more about our story at https://youtu.be/CQOy3TWwfSQ
My first-born child developed a mixed hemangioma on his upper lip and hand as well, both appearing during the second week of his life, that grew so fast and so big that not only became life-threatening (the facial hemangioma blocking my baby’s nostrils and causing respiratory problems) but also destroyed permanently the skin’s texture and the appearance of the affected areas. Fortunately, during this difficult period, we have been blessed to have met the most gifted, motivated and giving doctor of all, Mr Stavros Tombris, who took in charge of our son’s health and gave us hope. Ten years and several operations after, we are still on this journey together.
I’m a 38 year old daughter, wife and mother to 2 young men. I run my own successful business with my husband. I’ve been fortunate to be blessed by my Grandad (God bless his soul) who allowed me to have approximately 12 operations from the age of 8 until 23. My family finally said, “You are who you are, with or without your birthmark. DONT CHANGE.” Over the past 10 years I’ve learned to love and respect and embrace the person I am. I no longer feel the need to hide or cover my birthmark, as it makes me, ME!!!! Blessings and strength to all that are going through a tough time. Just know those tough times won’t last and neither will your insecurities. ❤❤❤