FARA Ambassador is more than a label. An ambassador is an active and visible participant in the FA community and asks for no recognition in return. Ambassador stories appear online and in the media, and we are always open and available to be contacted.
The FARA Ambassador Program is a volunteer-based committee of FARA, providing assistance when needed. As an indispensable component of the FA community, the FARA Ambassador Program advances FARA’s mission toward a treatment and cure for FA.
FARA Ambassador Program members are not permitted to provide medical supervision or advice. However, sharing perspectives and opinions derived from personal experiences is encouraged.
Individuals must be in High School to be eligible for the program.
MISSION and VALUES:
The FARA Ambassadors are positive, supportive, peer representatives for the FA community; actively raising awareness and funds for FARA.
Our mission demands a positive outlook in spite of our circumstances and a commitment to the following values as we set an example for the FA community.
Our core values:
Wisdom — Being inquisitive, innovative, thorough, and collaborative; mining knowledge and experience for living with FA; and sharing information and other resources in a timely manner.
Caring — Behaving with concern for the dignity, comfort, and well-being of people; respecting their individuality and perspective; and giving them our undivided attention.
Active — 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 — Lifting the mood of others, and being a source of hope and confidence and the kind of organization 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 our team as we work with one another to uplift the FA community and advance FARA's mission.
The Ambassador program focuses on several different projects throughout the year. Some examples include:
- Contributing posts to the ambassador blog (curefa.org/ambassadors)- Fundraising- Awareness: Rare Disease Day, FA Awareness Day, International Ataxia Awareness Day- Writing thank you cards to donors and organizers for FARA events- Communicating with newly diagnosed families- Helping others in the FA community with their fundraising projects- Speaking at fundraisers, community events, pharmaceutical/research organizations
Each project consists of at least two co-administrators and a committee. In addition to group monthly meetings, project committees will meet separately as they see fit in order to plan and execute the projects.
RESPONSIBILITIES and REQUIREMENTS:
The FARA Ambassador Program is an ACTION program. Our main goals support FARA and the FA Community as a whole. As described above, there are numerous ways in which these goals are accomplished. Below are the responsibilities required of each member in the program:
- Attend monthly meetings.The FARA Ambassador Program meets on the first Thursday of each month via WebEx. 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. Planning committees, roles and responsibilities for projects are determined at the meetings along with sharing of research updates and FARA news. It is necessary for members to have accurate and up-to-date information. * For Ambassadors who choose to commit to the program, it is required that you attend at least 10 of 12 monthly meetings. Fulfilling this requirement will make you eligible for travel funding to the AP training at the Philly Symposium. * If you are unable to attend a monthly meeting you need to notify someone on the AP Leadership Team.
- Participation in at least one of the Program projects (i.e. Ambassador Blog, Card Outreach, FA Hangouts, Patient Advocacy Speaking). We encourage participation in more than one project although only one is required.
- Willingness to reach out to the FA Community
- Submit your Ambassador bio to be published on the AP blog and be available to be contacted by FARA staff to connect with others with FA
-Participate in activities such as Move Your Way for Rare Disease Day, FA Awareness Day and others.
- Attend local FARA events and write at least one blog post a year about an event you attended.
- Uphold the MISSION and VALUES of the FARA Ambassador Program
Commitment to the FARA Ambassador program is an important promise made and upheld by each member. Please take time to consider the commitment.
This application will be open to submissions until Friday May 5, 2017.