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Ambassadors LT

 

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

 

Vision: The vision of FARA’s Ambassadors is a world without FA. This FA free world is one which we supported FARA in creating. We also see a world in which people with FA and their loved ones are respected and powerful.

Notes:

FARA Ambassadors support FARA by: • Being leaders in the FA community • Being inviting to FAmily and honoring their trust • Representing FARA • Sharing and finding different opportunities to share our personal stories with new and existing audiences • Educating ourselves and others about the scope and impact FARA has on our lives, communities and beyond

**Application process (shows level of interest/commitment)**

Roles and responsibility of Ambassadors (Definition): • Representative of FARA • Code of conduct • Attend monthly meetings and run one meeting a year. • To speak at an event or another outreach activity each year. • To be available to share your story through writing a bio for the website or through media related activities. • Blog • Add behavioral expectations (i.e...Honesty, respect, commitment, transparency)

Goals & Objectives

1. Support each other, effectively grow and work as a team. 1.1 Attend monthly meetings (consider going back to every two weeks with one session devoted to building personal connections in the group and the other session more business agenda) 1.2 Work on different projects as a team (i.e. Rare Disease Day) (build strong relationships (internal strength leads to external strength)) 1.3 Birthday list (build strong relationships) (take time to acknowledge each ambassadors birthday. i.e. birthday cards?) 1.4 Educate ourselves about the scope (attend & support in educational events) 2. Be responsive to (strengthen, support) the FA community. 2.1 Establish online presence (visible & accessible) where ambassadors are in essence peer counselors for parents, newly diagnosed and anyone having a hard time with FA. i.e.. google hangouts, private personal emails, specific email groups, 2.2 Initiate contact with families newly diagnosed or new to the community 2.3 Keep regular contact with FA community (i.e. patient registry, FAPG, organized events) 2.4 Develop an info packet for the newly diagnosed 2.5 develop a way for children with FA to connect with other children with FA (i.e. google hangouts or possible group outings?) 2.6 Take responsibility for sending out personal thank you’s to FA community in recognition & gratitude for awareness & fundraising events 2.7 Mechanism for addressing questions from the patient community but with a group experience response 3. Responsible & positive peer representatives of FARA. 3.1 Assume responsibility of representing FARA in actions & words (even on personal fb, twitter, etc. profiles). Treat this as a job that extends to personal presentation (professional, appropriate, responsible, encouraging, warm, hopeful) 3.2 Represent what the future of FA will look like 3.3 Speak at an event as a representative of FARA (annual requirement?) *standard needed* 3.4 Ambassadors are well-informed with up to date information regarding FARA’s work & FARA funded/sponsored research 4. Exemplify & spread hope (Awareness) 4.1 Each ambassador is to w rite at least 1 blog annually that conveys a realistic but hopeful attitude 4.2 Ambassadors convey an attitude of hope in social media (as detailed in our roles and responsibilities doc?) 4.3 Ambassadors attend local FARA fundraisers not only to raise money for research, but also to further a message of hope *standard needed* 4.4 Ambassadors are well informed about the science of FA (while we may not be scientists) so we can convey a knowledgeable message of hope (which is harder to discount) 5. FARA Fudraising 5.1 Hold a FARA event or personally fundraise as part of a FARA event (i.e. Ride Ataxia) (annual requirement vs. dollar amount requirement?) *standard needed* 5.2 Generate a list of fundraising ideas and plans to implement to provide to those wanting to hold an event but not sure where to start, 5.3 Support others with fundraising events; help with planning, seeking new community members to fundraise (outreach requirements?) *standard needed* 5.4 Government level advocacy (i.e. storming the Hill, letter writing campaigns, individual outreach to key representatives…)

SWAT AnalysisStrength- our experience with FA, Eagerness to share, warm hearts • Weakness- organizational structure, precedent, expertise, qualifications • Opportunities- unite the FA community, provide a unique level of support where people have access to several responsible people with knowledge and experience in a number of relevant topics • Threats- perception that we are some sort of elitist group, ourselves, how we conduct and market FARA.

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