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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!


 

FA Hangouts - June 2017

FA Hangouts June17The FARA Ambassador Program presents an FA Hangout talking about: FA and travel. Yes, we have talked about this before! But there is always more to say about this subject. Where have you been? What did you do? What tips do you have for traveling? Learn where you want to go next.

At FA hangouts: we laugh, we connect, we hangout, we learn from and about each other...it is so fun! It is just an informal discussion with a theme. We just talk when the theme has run its course, no pressure. People who just want to listen are very welcome!

Every hangout is open to anyone with FA and a translator if needed for hearing or speech difficulties.

When: Hangouts will be held Tuesday June 27th, Wednesday June 28th, and Thursday June 29th (mark your calendars, FA Hangouts will be the last consecutive Tuesday, Wednesday, and Thursday of the month, except on holidays and the like) at 8-9:30 PM ET all three days.

How: Email fahangouts@gmail.com to sign up or ask questions. Google (not us!) limits hangout capacity to 10 devices. FA Hangouts do fill up. It is first come, first served. So, the earlier you sign up, the more likely you are to get the date and time you want. Lately all our hangouts have been filling up. If you signed up and can’t make it, please let us know so we can give the slot to someone else.

An email will go out (at the latest) 30 minutes prior to your assigned time with a link to join the Hangout. Feel free to come early for a pre-hang. We will open the hangout room 15 minutes early, but the topic conversations will begin at the top of the hour.

See you soon!

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Friedreich's Ataxia Awareness Day 2017

FAAD 2017 graphicA picture is worth a thousand words. Make a simple but bold statement on FA Awareness Day (Saturday, May 20) with a picture that says it all! #CureFA. It's what we're hoping for and working towards. It's our rally cry, our motivation, our mission, our goal. Join us and let's tell the world...TOGETHER let's #CureFA.

We'd like to introduce a #CureFA photo campaign. It's easy to participate, and we want YOU to join us! No matter where you are in the world or how you are tied to the community, our common collective goal is to #CureFA. Here's how to get involved...find a photo setting that is representative of your geographical region, your work, your favorite hobby or your community; take a photo of yourself with the #CureFA printout sign (link below) or create your own; send it to stephanie.magness@curefa.org Set it! Snap it! Send it! Share it! 

So, how do you participate? 

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Read more: Friedreich's Ataxia Awareness Day 2017

A Night to Fight FA

Hill BurrowsOn April 1, 2017 The Burrows Hill Foundation held our inaugural 'A Night to Fight FA' auction fundraiser. We formed the foundation about six months ago and immediately began thinking of what we could do to help the FA community. We decided on an auction fundraiser and got to work right away. With the help of countless friends and family members and amazing support from the community, it was a smashing success.

Our 350 guests were greeted at US Naval Academy Football stadium by a 1976 VW bus that has been converted into a photo booth. After some fun photos, guests headed up to the top of the stadium to the Akerson Tower where they were treated to a stunning view of the Navy Football Stadium and the city of Annapolis. Our silent auction included 75 items and our live auction included trips to Disney World, Deep Creek Lake, Sanibel Island, Easton Maryland and the British Virgin Islands. In addition, we had a gorgeous hand-made wooden kayak, that was built specifically for this event. Ron Bartek agreed to speak at the event and was able to share some knowledge about FA with an audience that was largely unfamiliar. 

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Read more: A Night to Fight FA

FA Hangouts - April 2017

FAHangouts April17The FARA Ambassador Program presents an FA Hangout talking about: FA and finances. How do you manage the extra expenses of being disabled? How do you balance living a full life today with preparing for the future? Let others know what works for you and learn your next financial to-do. 

At FA hangouts: we laugh, we connect, we hangout, we learn from and about each other...it is so fun! It is just an informal discussion with a theme. We just talk when the theme has run its course, no pressure. People who just want to listen are very welcome!

Every hangout is open to anyone with FA and a translator if needed for hearing or speech difficulties. 

When: Hangouts will be held Tuesday April 25th, Wednesday April 26th, and Thursday April 27th (mark your calendars, FA Hangouts will be the last consecutive Tuesday, Wednesday, and Thursday of the month, except on holidays and the like) at 8-9:30 PM ET all three days. 

How: Email fahangouts@gmail.com to sign up or ask questions. Google (not us!) limits hangout capacity to 10 devices. FA Hangouts do fill up. It is first come, first served. So, the earlier you sign up, the more likely you are to get the date and time you want. Lately all our hangouts have been filling up. If you signed up and can’t make it, please let us know so we can give the slot to someone else. 

An email will go out (at the latest) 30 minutes prior to your assigned time with a link to join the Hangout. Feel free to come early for a pre-hang. We will open the hangout room 15 minutes early, but the topic conversations will begin at the top of the hour.

See you soon!

The FARA Ambassador Program presents an FA Hangout talking about: FA and finances. How do you manage the extra expenses of being disabled? How do you balance living a full life today with preparing for the future? Let others know what works for you and learn your next financial to-do.

At FA hangouts: we laugh, we connect, we hangout, we learn from and about each other...it is so fun! It is just an informal discussion with a theme. We just talk when the theme has run its course, no pressure. People who just want to listen are very welcome!

Every hangout is open to anyone with FA and a translator if needed for hearing or speech difficulties.

When: Hangouts will be held Tuesday April 25th, Wednesday April 26th, and Thursday April 27th (mark your calendars, FA Hangouts will be the last consecutive Tuesday, Wednesday, and Thursday of the month, except on holidays and the like) at 8-9:30 PM ET all three days.

How: Email fahangouts@gmail.com to sign up or ask questions. Google (not us!) limits hangout capacity to 10 devices. FA Hangouts do fill up. It is first come, first served. So, the earlier you sign up, the more likely you are to get the date and time you want. Lately all our hangouts have been filling up. If you signed up and can’t make it, please let us know so we can give the slot to someone else.

An email will go out (at the latest) 30 minutes prior to your assigned time with a link to join the Hangout. Feel free to come early for a pre-hang. We will open the hangout room 15 minutes early, but the topic conversations will begin at the top of the hour.

 

 

 

 

 

 

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Ambassador Program Applications 2017

Apply AP 2017FARA Ambassadors are FA patient volunteers who bridge the gap between research, patient care and awareness of Friedreich’s Ataxia. Ambassadors are positive and supportive, peer representatives for the FA community dedicating their time and effort to raise awareness and funds for FARA.

The FARA Ambassador Program (AP) meets on the first Thursday of each month via WebEx. A large contributing factor to the effectiveness and success of this program is being present and active. Planning committees and project resposibilities are determined at the meetings along with sharing of research updates and FARA news.

The AP focuses on several different projects throughout the year. Some examples include:

- Contributing posts to the Ambassador Program blog (curefa.org/ambassadors)
- Writing thank you cards to donors and organizers for FARA events
- Monthly FA Hangouts
- Speaking at fundraisers, community events, pharmaceutical/research organizations
- Fundraising
- Awareness: Rare Disease Day, FA Awareness Day, International Ataxia Awareness Day
- Communicating with newly diagnosed families
- Helping others in the FA community with their fundraising projects 

How do I get involved?

Spend some time to read the description of the program at the beginning of the application here: https://goo.gl/forms/JbjJXYnZIJ8ydznp1. Consider how the roles and responsibilities might fit in with your life and schedule. Choose the appropriate commitment level for your situation.  Then fill out the rest of the online application and click submit!  Someone from the AP Leadership will be in touch with you for the next steps.  The application deadline is Friday, May 5th.

Questions? info@curefa.org

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