The Aneurysm and AVM Foundation (TAAF) is excited to launch the TAAF Youth Ambassador Program, a new advocacy initiative for children/teens within the greater aneurysm and AVM community. By raising awareness and support of novel research, TAAF Youth Ambassadors will learn leadership and service. Participants are encouraged to combine their passion for arts, science, sports and other interests with community service to help put a public face to children affected by aneurysm and AVM in the United States.
We will be expanding our Ambassador Program in the new year. Look for more information and applications to appear on our website in 2020.
Erica Carnegie: The 1st of Many Ambassadors
As a Teen Ambassador, I want to educate others on rare diseases in children, advocate for more research and share my story. My goal, while talking about rare diseases, is to focus on AVMs and spread the word about TAAF. Now that I have made contacts with several politicians at our State Capitol (I interned during Spring Break 2019), I will try to get time to speak with them about these issues. I intend to learn more, work closely with TAAF and their goals, and use this opportunity as a Teen Ambassador to benefit the organization and those suffering from AVMs.
As highlighted in The Rylan Project Superhero Saturday, Erica has an amazing story of how she is using her experience with an AVM to reach out in her community and spread awareness. Read her story here:
My name is Erica Carnegie! I am 16 years old, and I am an AVM survivor. I was diagnosed with a facial AVM when I was in elementary school. The AVM was located on my left cheek, just below my eye. Over time, it grew and spread over my eye socket which caused my left eye to be pushed upwards and almost closed. Because of that, my eyes were not symmetrical and my left eye was much higher than my right eye. Sometimes, it looked like my right eye was bulging while the left eye was almost completely shut. It became more noticeable as I hit my mid-teens, and I started getting lots of questions like “What’s wrong with your eye”, “Did someone punch you in your eye?”
On the day of my surgery, January 24, 2018, I was very anxious!! I have always been confident, excelled academically, was involved in extracurricular activities and volunteered in my community. However, I wanted to compete in pageants, but realized that my AVM was in the way. After healing from my surgery, I decided to compete and just go for it. In June 2018, I was crowned Junior Miss of Florida. In November, I competed at the national competition for the title of Junior Miss of America and placed overall 2nd runner up. I also won the National Talent Award and the National Fun Fashion/Modeling Award.
This surgery has literally changed my life! My journey has been amazing, and I have come a long way in the past year. I went from hiding my face in pictures to competing on a national stage and finally talking about a disease I have lived with almost my entire life. As I shared my story, I found out that I wasn’t alone. Talking to others about my AVM made me feel free, and I decided that I wanted to help other kids.