The FARA Ambassador Program

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.