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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!


 

Sean Baumstark

My name is Sean and I live in Sacramento, California. I love it here. Outside of four years of college and one year in Germany, Sacramento has been home for me since I was 17. I am 32 now. I can be silly, I play pranks on people I love, I can’t seem to do or talk about anything without making jokes, and I smile and laugh often.

I grew up with an interest in acting, the stage, and the piano. I wanted to be famous and I wanted to be talented. I was never much interested in sports – just wasn’t my thing. I’m the youngest of six kids and the siblings I remember living with growing up were all active and involved in sports. Our parents were supportive in anything we wanted to do and left it up to us to choose what we wanted to try and what we wanted to avoid (mostly – avoiding chores was never an option). They found ways to successfully juggle their careers, church life, chores, school, kids, and all the things we wanted to be involved in.

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Megan

Hi Everyone! My name is Megan. I am 29 and I'm from a small town called North Baltimore, Ohio. I am the mother of one beautiful 4 year old little girl named Olyvia and I just recently got married! I am a student at The University of Cincinnati but I do it all online. I am majoring in Health Information Management.

I was diagnosed with FA at age 18. When I was about 15, I was running track, playing volleyball and very active and began being picked on by coaches, teammates and friends for the way that I walked and ran. My knees locked and I was very flat-footed and awkward. My brother told me to loosen up because I walked like a “soldier”.

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HOPE

Hope. Hope is a small, four letter word that has great meaning behind it. Within the past few months of participating in the FARA Ambassador Program and being actively involved in the FA Community, I have developed a new light of faith and gratefulness through hope! In April, I was fortunate enough to participate in a clinical trial at the Children’s Hospital of Philadelphia (CHOP) and in May, my family hosted our 2nd Annual 5K Race for Christina! It’s the “grassroots” events like these that give FARA and the FA community the opportunity to raise awareness and funds to participate in research to help find a cure!

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The 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.
The FARA Ambassadors envision a world without FA. This FA free world is one we promise to support FARA in creating. We are dedicated to improving today’s world for all those affected by FA by strengthening the community and shining light into dark places.
FARA Ambassador Program Mission Statement:

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

Program Participants promise to support FARA and the FA community by:

 


Goals:

 


Our Core Values: These six principles guide the thoughts and actions of our team as we work with one another to uplift the FA community and advance FARA's mission.

 


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

  • Being leaders in the FA community.
  • Being inviting to Family and honoring their trust.
  • Representing FARA.
  • Purposely seeking 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.
  • To support each other as a team.
  • To support the FA community.
  • To have monthly meetings via the web during which we will:
      -Share our stories. -Discuss opportunities to generate interest in FARA. -Asses our effectiveness.
  • To contribute to the FARA Ambassador Blog.
  • To support the community through personal cards of thanks and encouragement.
  • To build community connections via web meeting outreach.
  • To have participants speak at and/or attend FARA events.
  • To continuously tighten our bond as a united team.
  • To continuously strengthen our new and existing relationships within the FA community.
  • To have fun.
  • 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.
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Ambassador Program Projects

The defining purpose of each of the FARA Ambassador Program projects is SUPPORT. Through committed participation, members of the FARA Ambassador Program will support the FA community and FARA's goals and mission as we move toward treatment and a cure for FA.

Current Projects:

 

 

  • Ambassador Program Blog (start date: June 2014)
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    Upcoming Projects:

     

     

  • Speaking Engagements
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    Ambassador Program Projects will be rolled out one by one. As a project is strong and functioning, a new one will begin. The four specified here will be the only four projects the Ambassador Program will be focusing on in 2014. Please look through each listed above and think about what area(s) you would like to be involved in.

    • Engage Project
    • Card Outreach
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