Youth Ambassador Program

Lead. Advocate. Inspire! Welcome to the TAAF Youth Ambassador Program

Become a TAAF Youth Ambassador! 

The TAAF Youth Ambassador Program, offered by The Aneurysm and AVM Foundation (TAAF), is an advocacy initiative designed for children and teenagers within the broader aneurysm, AVM, and stroke community. The program empowers young individuals to raise awareness and support innovative research while gaining valuable leadership skills and developing a strong sense of service. Participants are encouraged to merge their passions for arts, science, sports, and other interests with community service, playing a vital role in giving a voice to children affected by aneurysm and AVM across the United States and beyond.

 

Empower and Be Heard

TAAF Youth Ambassadors will empower other survivors and community members through their social activism, leadership and storytelling/sharing.

TAAF Youth Ambassadors who have access to social media will be asked to:

  • Post at least one quality piece of content every month.
  • This content can be self-selected but must align with TAAF’s mission. If not self-selected, content may be shared from both TAAF and TAAF 4 Kids (TAAF’s pediatric initiative) social media feeds or website.
  • Social media participation is encouraged, but those without access can still help spread awareness by encouraging others to utilize their social media.


TAAF Youth Ambassadors should be active role models within their home communities. Examples may include:

  • Advocating for TAAF’s mission and programs in forums like debate teams or pageants.
  • Encouraging participation in school events during awareness months, such as Rare Disease Day, Aneurysm or AVM Awareness Month, or World Gratitude Day.
  • The opportunities are endless, and TAAF Youth Ambassadors should discuss all activities with the Foundation beforehand.


TAAF Youth Ambassadors will learn how to tell their story and how to listen to the stories of others.

  • TAAF Youth Ambassadors will receive storytelling and advocacy training via email/modules to help them better raise awareness within their communities, policymakers, and other stakeholders.
  • Empathy exercises and video links will be provided to enhance leadership and listening skills

 

Make Big Decisions

The TAAF Youth Ambassador program is right for you if you are:

  • 10 to 17 years old at the time of application and have been affected by aneurysm or AVM.
  • Able to lead a community-based project, with some support from TAAF, to raise awareness or support for the aneurysm and AVM community.
  • Willing to share your personal aneurysm or AVM story, both in writing and in front of groups at TAAF events like TAAF Walk, TAAF 4 Kids, school activities, and other events.
  • Enthusiastic and passionate about TAAF’s mission, especially raising awareness for aneurysm and AVM research.
  • Interested in meeting peers and adult community members.
  • Enjoy participating in social media roles.

 

TAAF Youth Ambassador General Social Media Policy

Not all TAAF Youth Ambassadors will have access to or interest in social media, and that's perfectly fine. For those who choose to utilize social media, they will be required to adhere to our TAAF Youth Ambassador General Social Media Policy:

TAAF Youth Ambassadors who use their personal social media accounts to promote the TAAF Youth Ambassador Program agree to:

  • Encourage and promote aneurysm or AVM awareness through positive interactions, sharing, and storytelling.
  • Keep online conversations light and professional. Inappropriate behavior, including profanity, bullying, etc., may result in removal from the program.
  • Protect their privacy and the Foundation’s when interacting online. Never share personal information like full names, addresses, or phone numbers without parental permission.
  • Be honest when sharing, and always give proper credit to authors or artists when referencing or sharing someone else’s work.
  • If unsure about what to share, seek guidance from the TAAF team.
  • Remember, social media is permanent—use good judgment.

 

Make an Impact

TAAF Youth Ambassadors may participate in activities like:

  • Create and lead project in their community.
  • Writing a letter to elected officials sharing their aneurysm or AVM story.
  • Meeting with elected officials in their local offices.
  • Speaking at TAAF events or at school events.
  • Recruiting other Ambassadors at events like TAAF Walk, TAAF 4 Kids, and online.
  • Attending town hall meetings with parents or caregivers.
  • Integrating their aneurysm or AVM story into existing school projects.
  • Brainstorming additional ways to get involved with TAAF.

 

Other Youth Ambassador Expectations

TAAF Youth Ambassadors will also be expected to:

  • Bring a positive, professional attitude and commitment to amplifying TAAF’s mission.
  • Develop a report highlighting accomplishments and lessons learned at the end of the year.
  • For projects that extend beyond one year, develop a brief progress report at the end of each year.
  • Create a personal fundraising project with a goal of raising at least $1,000 to support TAAF programs and research.

 

For the Parent(s) or Legal Guardian(s)

Parents or legal guardians must give permission for participation in the program. The program is primarily email-based, with participants receiving most program information via email. We also use an app called BAND to share information. Both the participant and parent/guardian will have contact information for TAAF staff. Parents or guardians are the preferred point of contact. If the participant is the main contact, parents must be copied on all email correspondence.

TAAF Youth Ambassadors are not required to have/had an aneurysm or AVM. Siblings of survivors, friends of the Foundation, or any interested student between the ages of 10 and 17 may apply. 

What is the expected time commitment?
While we are looking for committed TAAF Youth Ambassadors, in no way do we want program involvement to become too demanding. It is our vision to provide the TAAF Youth Ambassadors with a series of meaningful and reasonable opportunities for engagement, and liken their time commitment to that of other after-school programs.

 

Sign Me Up!

To get started in the TAAF Youth Ambassador Program, applicants must:

  1. Complete the TAAF Youth Ambassador Application (available by email—contact Dina Chon at dina@taafonline.org).
  2. A parent or legal guardian must sign the application.
  3. Share your written aneurysm or AVM story and include it with your application, along with a photo.
  4. Provide two references who can speak to your character and commitment to aneurysm or AVM awareness.
  5. Submit your community project proposal, which should demonstrate how you will raise awareness and support for the aneurysm and AVM community.

Once your completed application is received, we will confirm your participation via email. Participation is primarily through email. Parents or legal guardians must have an email account. 

2025 application season has started. Applications will be accepted until April 4th, 2025.  Interested? Email dina@taafonline.org for more information.

Erica Carnegie: The 1st-Ever TAAF Youth Ambassador 


 
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.

Erica’s Story!

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.