TAAF 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 raising awareness and supporting the aneurysm and AVM community 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 choose to utilize 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, Stroke Awareness Month, etc.
  • 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

Is the TAAF Youth Ambassador Program Right for You?

The TAAF Youth Ambassador Program is right for you if you:

  • Are 10–18 years old at the time of application, enrolled in middle school or high school, and interested in supporting the aneurysm and AVM community.
  • Are willing to lead a community-based project with support from TAAF.
  • Want to raise awareness and support for the aneurysm and AVM community.
  • Are willing to share your personal story in writing and in front of groups when appropriate.
  • Are enthusiastic about TAAF’s mission and the future of aneurysm and AVM research.
  • Enjoy meeting new people and building community.
  • Have an interest in advocacy, leadership, public speaking, fundraising, storytelling, social media, or service.

 

TAAF Youth Ambassador General Social Media Policy

Not all TAAF Youth Ambassadors will utilize social media, and participation in the program does not require a personal social media account.

For those who choose to use social media as part of their Ambassador activities, the following guidelines apply:

  • Encourage and promote aneurysm or AVM awareness through positive interactions, sharing, and storytelling.
  • Keep online conversations respectful 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 a project in their community.
  • Writing letters to elected officials about aneurysm and AVM awareness.
  • 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.

 

What Does a Great Ambassador Look Like?

Great Youth Ambassadors are not expected to be perfect.

They are young people who care about others, are willing to learn, and are committed to making a difference in their communities.

The most successful Ambassadors lead with compassion, curiosity, and a desire to help others feel seen, supported, and empowered.

Great Ambassadors:

  • Bring a positive and professional attitude.
  • Lead by example in their schools and communities.
  • Support and encourage others.
  • Represent TAAF and its mission with integrity.
  • Follow through on commitments and responsibilities.

Program Expectations:

  • Develop an annual report highlighting accomplishments and lessons learned.
  • Submit a brief progress report for projects extending beyond one year.
  • Create a personal fundraising project with a goal of raising at least $1,000 to support TAAF programs and research.

For Parent(s) and Caregiver(s)

Parents or legal guardians must provide permission for participation in the program.

Most program communication is conducted through email. Both participants and parents or guardians will have access to TAAF staff contact information. We also utilize an app called BAND for communication and updates.

Communication Guidelines

  • Parents or guardians are the preferred point of contact.
  • If a participant is the primary contact, parents or guardians must be copied on all email correspondence unless the participant is 18 years of age or older or written consent has been provided by a parent or legal guardian.

Eligibility Reminder

Youth Ambassadors are not required to have experienced an aneurysm or AVM personally.

Eligible applicants may include:

  • Survivors
  • Siblings
  • Family members
  • Friends of the Foundation
  • Students interested in advocacy and awareness

Any interested student between the ages of 10 and 18 who is enrolled in middle school or high school may apply.

How to Apply

To apply for the TAAF Youth Ambassador Program:

1. Complete the Application

Request an application by emailing Dina Chon at dina@taafonline.org.

2. Parent or Guardian Signature

A parent or legal guardian must sign the application.

3. Share Your Story

Please submit:

  • A personal story (1–2 pages, written in your own words) about your aneurysm or AVM experience, your connection to the community, or why you would like to become a TAAF Youth Ambassador.
  • A recent photo of yourself.

If selected, your story and photo may be featured by TAAF in publications, social media, and other awareness materials.

4. Provide References

Include two references who can speak to your character, leadership potential, and commitment.

5. Submit a Community Project Proposal

Your proposal should explain how you plan to raise awareness and support for the aneurysm and AVM community.

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

2026 application season has started. Applications will be accepted until June 15th, 2026.  Interested? Email dina@taafonline.org to request an application.

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.