Become a TAAF Youth Ambassador
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.
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 allowed to have social media accounts will be asked to:
1. Post at least one quality piece of content every month. This content can be self-selected, but must be approved by their TAAF mentor.2. If not self-selected, content may be shared from both TAAF and The Rylan Project (TAAF’s pediatric initiative) social media feeds or website without mentor approval. Participants can always share our social media.
See more on social media in the Big Decisions section below.
TAAF Youth Ambassadors should be active role models within their home communities. Examples of this may be:
a. Discussing/Advocating for TAAF’s mission and programs in open forum opportunities such as debate team or pageants.b. Encourage participation in activities at your school during big awareness months or days. Examples are: Rare Disease Day, Aneurysm Awareness Month or World Gratitude Day.
The opportunities are endless. TAAF Youth Ambassadors should discuss all activities with their mentor beforehand.
TAAF Youth Ambassadors will learn how to tell their story and how to listen to the stories of others.
a. TAAF Youth Ambassadors will receive storytelling and advocacy training via email to help them better raise awareness with community members, policymakers, etc.b. Empathy exercises and video links will also be made available so as to help make each a better listener and leader within their social groups and the greater aneurysm and AVM community
Make Big Decisions
The TAAF Youth Ambassador program is right for you if you are:
a. 10 to 17-years-old at time of application and aneurysm or AVM has impacted your life;b. Willing to share your personal aneurysm or AVM story, both in writing and in front of groups, at TAAF Walk--TAAF’s Annual Aneurysm and AVM Awareness Walk—TAAF programs and events, meetings with elected officials, happenings in your town or school and other events;
c. Enthusiastic and passionate about TAAF’s mission and goals especially awareness and aneurysm and AVM research;
d. Interested in meeting with peers and adult community members and receiving mentorship from TAAF staff and volunteers.
e. Enjoy a social media role.
TAAF Youth Ambassador General Social Media Policy
Not all TAAF Youth Ambassadors will have access or interest in social media from a personal level. That’s fine. Those without access will still be asked to encourage others to utilize their social media to spread awareness, share about activities, etc.
Those TAAF Youth Ambassadors who choose to utilize social media will be required to adhere to our TAAF Youth Ambassador General Social Media Policy which states:
TAAF Youth Ambassadors who use their personal social media accounts to advertise their participation in the TAAF Youth Ambassador Program agree to:
a. Encourage and promote aneurysm or AVM awareness through positive interactions, sharing and storytelling.b. Keep online conversations light and professional. Note: The things that can get one removed from Twitter (for example)—profanity, bullying, etc.--are the same things that can get you removed as a TAAF Youth Ambassador. Unacceptable behavior is often fluid and/or subjective. Not all examples are listed herein. The Aneurysm and AVM Foundation may remove participant from the TAAF Youth Ambassador Program at any time and without cause.
c. Take extra care to protect yourself, your privacy, and TAAF when interacting online. Do not give out any private information, such as your full name, date of birth, address, or phone number without parental permission. Tell a trusted adult if anyone online makes you feel uncomfortable, sad, or unsafe.
d. Be honest when sharing. When you reference, or share someone else’s creative work online, give proper credit to the author or artist.
e. When in doubt about what to share, ask your TAAF mentor.
f. Remember, social media is FOREVER. Use good judgement and you will thrive.
Make an Impact
What types of activities might TAAF Youth Ambassadors be encouraged to participate in?
a. Writing a letter to your elected official telling them your aneurysm or AVM story.b. Meeting with your elected official in his/her local congressional office.
c. Telling your aneurysm or AVM story at a TAAF or school event.
d. Helping to recruit other Ambassadors at events like TAAF Walk, The Rylan Project’s Super Hero event, online within your social group, etc.
e. Attending a town hall meeting with your parent(s), legal guardian(s) or caregiver.
f. Finding a way to tell your aneurysm or AVM story (or do research on kids with aneurysm or AVM) through one of your existing activities, like school projects.
g. Brainstorming other meaningful ways for TAAF Youth Ambassadors to get involved with The Aneurysm and AVM Foundation (TAAF).
Other Youth Ambassador Expectations
TAAF Youth Ambassadors will also be expected to:
a. Bring a positive, professional attitude and commitment to amplifying the mission of The Aneurysm and AVM Foundation.b. Develop a report highlighting accomplishments and lessons learned at the end of the project.
c. For projects that extend beyond one year, TAAF Youth Ambassadors should develop a brief progress report at the end of each year.
d. Create a personal fundraising project and set a financial goal of $1,000 or more 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 mostly email based, meaning participants will receive most program information by email. Both participant and parent(s) or legal guardian(s) will have contact information for the Community Engagement Manager as well as the participant’s mentor (when different).
Parent(s) or legal guardian(s) are the preferred contact. If participant is the main contact, parent(s) or legal guardian(s) must be copied on all email correspondence.
TAAF Youth Ambassadors are not required to have had an aneurysm or AVM. Additionally, siblings of a survivor, 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 overall vision to provide the TAAF Youth Ambassadors with a series of meaningful and reasonable opportunities for engagement.
Sign Me Up!
To get started in the TAAF Youth Ambassador Program, applicants must:
- Complete the TAAF Youth Ambassador Application. Application available by email only. Please contact Dina Chon at dina@taafonline.org.
- A parent or legal guardian must give permission and sign the application.
- Share your written aneurysm or AVM story and include it with your application and photo.
Once your completed application has been received, we will send you an email confirming your participation.
Participation in the program is primarily through email. Participants’ parent(s) or legal guardian(s) must have an email account.
2023 application season has started. Applications will be accepted until February 24th, 2023. Interested? Email dina@taafonline.org for more information.
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.
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.