My Name is Ava Pyles, and I am the creator of the Miles for Vascular Anomalies Run Walk Club!

Here’s a little bit about my journey and what led me to create this Run Walk Club. I was born with a rare Vascular Anomaly called an infantile Hemangioma. Over the past 26 years, I’ve had over a dozen operations and laser treatments on my birthmark. I was also born with a rare syndrome called PHACE Syndrome, which stands for Posterior Fossa, Hemangioma, Arterial Abnormalities, Cardiac Problems, and Eye Problems. To have PHACE Syndrome, you have to have a Hemangioma and one other acronym. I have 3 of the acronyms: A Posterior Fossa cyst in my brain, an infantile Hemangioma on the left side of my face, and eye abnormalities. I also have Dandy-Walker Syndrome. Not a lot of people know about my condition, which is why I had to travel to different states for treatment and still do. 

Growing up with a vascular birthmark was not easy at times. I dealt with a lot of bullying and had to build up my self-confidence. Over the years, I’ve found strength in connecting with and meeting others with birthmarks like mine, which has been life-changing. The running community has also been a place where I feel loved and accepted. When I’m running, I feel empowered to reach new goals, despite the challenges I’ve faced. 

So naturally, I wanted to create a space where those two communities can come together, and that’s Miles for Vascular Anomalies.

Our goal for Miles for Vascular Anomalies is that every mile run or walked will support individuals living with Vascular Anomalies and related syndromes, bringing the running community and the birthmark community together to spread awareness and raise money for the Vascular Anomalies Alliance organization. The VAA  is a new nonprofit organization I’m incredibly excited to support. The Vascular Anomalies Alliance’s mission is to help connect and support our community of those living with vascular anomalies and related syndromes. We strive to REACH our community by financially supporting advancement in Research, and Education, and advocacy, while creating a safe space and sense of Community where everyone feels at home.

When joining the Run Walk Club, you will register on RunSignup and pay a yearly donation of $40 to participate and a $3.40 Run SignUp processing fee. You’ll be able to participate in different challenges, including Apple Watch, Strava, and various social media challenges and activities. You will also be able to participate in group stretching and yoga sessions. You can participate in all the different activities in person and virtually. We also hope you will consider creating a run-walk for a cause fundraiser to support the Vascular Anomalies Alliance. As a thank you for your donation, your registration for the Run Walk Club will also include a shirt.

I’m so excited to have you join us in this journey and help us REACH our community! If you have any questions, feel free to email me at milesforvascularanomalies@gmail.com or reach out on social media.