LEARN MORE ABOUT THE AMBASSADORS

About the FARA Ambassador Program

The FARA Ambassador Program is a volunteer service team within FARA consisting of individuals living with FA ages 16 and older.

FARA Ambassadors are individuals with FA who bridge the gap between research, patient care, and awareness of Friedreich’s ataxia. Ambassadors are passionate about building and upholding relationships within the FA community. FARA Ambassador is more than a label. An ambassador is an active and visible participant in the FA community whose stories appear online and in the media.

Together, they stay informed about the FA Drug Development Pipeline to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. They meet with scientific groups, pharmaceutical industry partners, and the Food and Drug Administration (FDA) to promote awareness of the patient perspective of living with FA. As an indispensable component of the FA community, the FARA Ambassador Program advances FARA’s mission toward treatments and a cure for FA.

FARA Ambassadors are active members of the community.

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Fundraising

Ambassadors attend and/or organize events in their communities.

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Awareness

Ambassadors seek to raise awareness of FA by sharing their stories and participating in virtual campaigns like FA Awareness Day.

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Advocacy

Ambassadors are ready to answer calls to action and participate in events like United Against Ataxia Hill Day.

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Appreciation

Ambassadors write thank you cards to donors, researchers, and FARA event organizers and volunteers.

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Communication

Ambassadors communicate with newly diagnosed families and serve as a resource to connect them with FARA and the FA community. They write blogs and speak at fundraisers, community events, and pharmaceutical/research organizations.

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Research

Ambassadors stay informed of clinical research and the FA Drug Development Pipeline.

AMBASSADOR PROGRAM APPLICATION

Apply to be a FARA Ambassador

Are you ready to take an active role in advancing FARA’s mission to treat and cure Friedreich’s ataxia? Applications are accepted and reviewed year-round; however, the main application cycle occurs from October-December, following the annual FARA/CHOP Research Symposium in Philadelphia. Each year of the Ambassador Program runs from February-November.

Apply to be a FARA Ambassador

To be a FARA ambassador, you must:

-Be 16 or older

-Have Friedreich’s ataxia

-Attend monthly virtual meetings

-Be willing to connect with the FA Community

-Be available to be contacted by FARA staff to connect with others with FA

-Attend local/virtual FARA events and write blog posts about the events you attend

-Uphold the mission and values of the FARA Ambassador Program

-Commit to the rule that FARA Ambassadors are not permitted to provide medical supervision or advice. However, sharing perspectives and opinions derived from personal experiences are encouraged

Commitment to the FARA Ambassador Program (AP) is an important promise made and upheld by each member. There are two commitment levels to choose from:

Tier 1 – Ambassadors in this group are fully committed to every aspect of the FARA Ambassador mission, values, and roles & responsibilities.  Each Tier 1 Ambassador is committed to at least 1 AP project and regularly attends monthly meetings.  Ambassadors must have been in the program for at least one year to be considered for Tier 1. Those in Tier 1 may be eligible to apply for travel funding for events such as the Annual FA Community Symposium in Philadelphia based on performance and attendance in the program.

Tier 2 – This commitment level is for first-time applicants and those who wish to be involved but are unable to fully commit to projects and meetings. Each participant in Tier 2 will receive all program emails and can participate in AP projects, AP training, and attend monthly meetings, but Tier 2 does not obligate your participation. Tier 2 Ambassadors are not eligible to apply for travel funding for events such as the Annual FA Community Symposium in Philadelphia.

Mission Statement: The FARA Ambassadors are positive, supportive peer representatives for the FA community who actively raise awareness and funds for FARA.

Values:

Wisdom — Being inquisitive, innovative, thorough, and collaborative; recognizing our expertise when it comes to understanding what it’s like to live with FA; and sharing information and other resources in a timely manner.

Compassion — Behaving with concern for the dignity, comfort, and well-being of others; respecting their individuality and perspective; and giving them our undivided attention.

Ambition — Being engaged in the FA community and moving quickly on opportunities to be a positive influence.

Quality — Setting extraordinarily high standards for the fight against FA, constantly improving, and attending to the details of excellence.

Spirit — Recognizing the importance of honoring one’s own emotions but lifting the mood of others and being a source of hope and confidence when one can; fostering a community of which people are proud to be part.

Integrity — Being honest, transparent, forthright and ethical; challenging anything that might compromise FARA’s mission and goal.

These six principles guide the thoughts and actions of the members of the Ambassador Program as they work with one another to uplift the FA community and advance FARA’s mission.

Ambassador Blog Team – writes posts for the Ambassador Blog about a variety of topics including events, interviews with the community (Meet the Community), and living with FA.

Card Writing Team – writes thank you notes to donors, researchers, and volunteers & organizers of FARA events.

Speaking Team – meets virtually once a month to practice speaking and get feedback on how to improve in preparation for possible FARA speaking engagements. Anyone can present their speech to the group and get a positive and encouraging evaluation. The goal is to get comfortable in front of others so we can be ready to represent FARA when the time comes.

FA Hangouts Team – Leads a safe place online via video chat for people with ataxia and their loved ones to talk & share about important topics or casually connect. 18+ only.

FA Teen Hangouts Team – Leads a safe place online via video chat for teens with ataxia to talk & share about important topics or casually connect. Teens only.

Social Media Team – Takes an active role in content creation and engagement for FARA’s social media accounts.  This includes attending team meetings, participating in social media projects and campaigns (ex. FA Awareness Day), and regularly engaging with FARA content (likes/comments etc.).

The FARA Ambassador Program meets on the first Thursday of each month at 7 PM Eastern Time via Zoom. Attendance is critical for group cohesion and basic organizational purposes. A large contributing factor to the effectiveness and success of this program is being present and active.

Meeting topics can include research updates, FARA news, event recaps, special projects, discussions with guest speakers, and time to connect with each other.

It is necessary for members to have this accurate and up-to-date information. Meetings are recorded for those who are unable to attend.

Although the FARA Ambassadors are primarily U.S. based, the program welcomes international ambassadors. FARA believes that international collaboration fuels our mission to treat and cure Friedreich’s ataxia! About once every quarter (3-4 times a year), a special international ambassador meeting is held at 12 PM Eastern Time (in addition to the typical 7 PM meeting) to better accommodate the time zone difference. All ambassadors are welcome at international meetings, but we will focus on topics relevant to the international community. Meetings are recorded for those who are unable to attend.

AMBASSADOR PROFILES

Meet the Ambassadors

FARA Ambassadors are located across the United States and around the world. Check out the ambassador profile page to meet the current FARA ambassadors and learn more about them.

Meet the Ambassadors
Group shot of FARA ambassadors
THE VOICE OF THE AMBASSADORS

The FARA Ambassador Blog

Blog
| Jul 15, 2024

Meet the Community – Caroline Spencer

Community
Blog
| Jul 11, 2024

Join FA Teen Hangouts on July 13, 2024!

Ambassador, Hangouts
Blog
| Jul 8, 2024

Meet the Community 2: A Closer Look – Marieke van Driel

Community
Blog
| Jul 1, 2024

Meet the Community – Claire Juip

Community
Blog
| Jun 20, 2024

2024 Cure FA Soirée Recap

Events
Blog
| Jun 17, 2024

Meet the Community – Kyle Duhon

Community
Blog
| Jun 10, 2024

Meet the Community – Hayden Clay Rogers

Community
Blog
| Jun 3, 2024

Meet the Community – Anita Gracey

Community
Blog
| May 28, 2024

Meet the Community – Tyler Ray Rogers

Community
Blog
| May 20, 2024

Meet the Community – Bernhard "Bernie" Metz

Community
Blog
| May 13, 2024

2024 Baton Rouge Research Reception Recap

Events
Blog
| May 2, 2024

Meet the Community – Jason Drake

Community