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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!


 

Quartermania for FARA

Quartermania 1On Wednesday, August 30, about 80 people gathered at Cabrillo Marina in San Pedro, California and raised about $3,000 for FA research. I know you're probably wondering what the heck Quartermania is because I didn't understand either until I played that night! So, I will try my best to explain.

A wonderful woman named Ann is in charge of hosting these fundraisers. She hosts Quartermania for different non-profit organizations and we were lucky enough to find her through my Aunt Kim who attended this event previously for another organization. Ann coordinates everything- she gets the vendors and materials needed for the event and all we had to do was find the venue and make the food pretty much.

As soon as you walked in the Marina Room, participants each paid admission which included dinner, cooked by my wonderful mother and Aunt Kim-they also received a token which was put into a community bucket with all the other participants numbered tokens and also a paddle(see picture). It was also an option to buy multiple paddles for a better chance of winning as well.There were about 8 vendors at the event , like Origami Owl, a customized jewelry company, a woman who put succulents in different everyday objects and a clothing boutique. The vendors were all small local business and the variety of prizes made this event awesome. We had about 15 donations for the raffle we chose to also have alongside Quartermania. Places like local restaurants, gyms, chiropractors and FARA all donated gift certificates and merchandise that we were able to give away as prizes. 

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FA Indy Family 5k Run/Walk

FAIndy 17This was the second year that FA-Indy presented FA-Indy Family 5k Walk/Run. On Saturday, August 26, 2017, people gathered at Freedom Springs Park in Greenwood, Indiana to raise funds for the FA community. Bob Schlageter explained, “The events are to raise money to financially assist those with FA in the Indianapolis area to get to doctor visits, drug studies, and handicapped equipment. We are working with some local contractors to assist with home modifications to make things easier at home. We have already been asked to help with getting a battery for an electric wheelchair.”

The event had an increase of 68% attendance from last year—138 in 2016 vs 231 this year—and a 27% increase in donations—$5,500 in 2016 vs $7,000 this year. 

“We have 8 known in the Indianapolis area with FA, 4 of which were at our event. Our daughter-in-law was diagnosed 4 years ago and we started planning for last year’s kickoff event,” said Bob Schlageter. 

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Kern County's Annual Reverse Draw for FARA

KCReverseD 17On April 1, 2017, our FARA Kern County Committee lead our Annual Reverse Draw to raise awareness and crucial funds for research! We had an amazing time of delicious food catered by Outback Steakhouse.  In addition to our amazing basket raffle, we added a Live Auction this year with several family trips and some other great items! Thanks to all who attended and to our wonderful sponsors to include Outback Steakhouse, Bitco, Cochran Mechanical any many more.  We raised a grand total of $16,135 for FA research! Our committee is so grateful to be a part of the grass roots efforts across the nation working to support Friedreich's Ataxia research! 

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FA Hangouts - September 2017

Hangouts Sept17The FARA Ambassador Program presents an FA Hangout talking about: Your best day. RJ Mercure will lead this hangout, and wants know about your best moment, pre-FA or with FA, or both!

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 September 26, Wednesday September 27, and Thursday September 28 (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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Inaugural Race for Matt & Grace Golf Tournament

MattGrace golf1

The first ever golf tournament on August 26th to support the Race for Matt & Grace fundraising group raised over $16,000 for FARA. But more impressive, we were able to fill the course with 34 foursomes making the long journey from RI to CT! (for those outside New England – yes, we are spoiled in RI and don’t drive anywhere outside a 15 minute radius… this is a big deal)

MattGrace golf2The Connecticut National Golf Club was ready for our FA community. Tucked away on a rural road in Putnam, CT, the course boasted challenging fairways, well-maintained greens, and came with perfect 70 degree late-August weather; a golfer’s dream day! Me and Friedreich decided to try our luck hacking away for 18 – why not?! Joined by my brothers and best friend, our foursome joined the 33 others in a scramble-format tournament, established to raise funds for FA research and find the best golfers in the bunch. I started golfing at a young age, but have become quite terrible from lack of practice and FA. Neither mattered on the 26th. We had a blast playing the course and enjoyed the “extra-curricular” activities at various holes. From putting tournament, to open grill, to hole-in-one challenges, to pre-tee-off drinks (definitely helped my nerves), to raffles, to free food/drink at multiple holes, to silent auctions, … there was never a dull-moment all day (and I never went hungry!). All the add-ons made the registration fee a bargain and helped generate more donations to FARA in fun ways. Despite many divots, missed fairways and duffed shots, I laughed and smiled the entire day – great company at great events for a great cause will always do that! 

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