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FARAFARA Cure FA

FARA Ambassador Program

The FARA Ambassadors is a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.

Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.

FARA Ambassador Program Mission Statement:

The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

The Ambassador Blog

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This blog is a vehicle for the voice of the FARA Ambassador Program and features posts from Program participants and friends from the FA community on a wide range of topics.

The blog features posts about FARA events, articles about living with FA, spotlights on individuals throughout the FA community, weekly interviews to “Meet the Community,” and more. We hope that you will be inspired, uplifted and encouraged through the FARA Ambassador Blog!


 

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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Jeannie Kinney

To all to all of you wonderful people, living this unpredictable life we live. I am Jeannie, J or to a select few mama J and mom. I am 40 years old with late onset Friedreich's Ataxia (FA). I have two siblings, one with FA and one without.

Here we go...when I was in high school, I did not have a clue that the reason all of my fancy dresses didn't fit right was due to a secondary condition of FA, scoliosis. No gym teacher or school nurse ever caught the curve in my spine, so I carried on. After college, I was oh so young and ready to save the world as the best nurse ever. Ha! My first symptom would soon be upon me but it only lasted thirty seconds or so, my feet felt heavy running down the corridor...hmmm strange, I thought. Then weeks and months went by, different things would happen but I just brushed them off. One day I was carrying my coffee to my station and it seemed like someone tripped me. CCU is known for practical jokes but no one was around, I looked;), and tried to act cool! This started a long search for a diagnosis. Thirteen doctors and muscle biopsies, scans, potential brain tumors, skull malformations, one spinal fusion surgery and two states later, I got my official diagnosis of FA. I don't think it hit me like a ton of bricks, I don't remember, my friend Tom will say it's because I'm so old!

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Swing Away at FA

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4th Annual Swing Away at FA
Saturday, October 19, 2013 Wiffle Ball Tournament & Family Fun Day
Benefitting FARA

 

In honor of the Stacks Family Jason and Candy, parents of Hannah, diagnosed with Friedreich's Ataxia in 2009, and, after three years of praying “that lightning wouldn’t strike twice,” her younger brother Austin, diagnosed in 2012.

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Christina Logan

Hello! My name is Christina Logan! I am 23 from Bucks County, PA. I come from a loving family who has helped shape who I am as a person today. They taught me how to be a good and striving person, and they have given me their unconditional love from the start. We have such a strong bond that nothing could tear us apart. Family truly means everything and I know they are here for me until the end.

So far, I have led a very fulfilled life with amazing experiences! Growing up, music has taken up a huge part of my life. I was very active in the musical departments at school. Since third grade, I've played the viola, piano and even tried the drums! In high school, I participated in the school orchestra, marching band and choir. My senior year, I even made first chair viola! I was fortunate enough to travel overseas for each group. I went to Italy, Ireland and England. They were the most incredible life events and I wouldn't change them for anything!

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RA Philly & CHOP Symposium

 

Five Ambassadors share about one great weekend.... Ride Ataxia Philly & the FA Symposium at CHOP!

I recently went to the Sixth Annual Freidreich’s Ataxia Symposium at Children's Hospital of Philadelphia (CHOP) with my very supportive father! This was our first year attending so we didn’t know what to expect. I was diagnosed almost two years ago with Friedreich’s Ataxia. So we were looking forward to meeting and connecting with new people and obtaining new information about treatments for this rare disease! 

The symposium was very informative between topics of current research of treatments, genetic testing, physical activity and mobility, and perspectives on clinical trials and driving! My dad and I got something out of each topic and left the symposium with new knowledge.

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