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FA Woodstock and Ride Ataxia Chicago

By Mary Vida

I had the pleasure to attend my first Friedreich’s Ataxia (FA) Woodstock a couple of weeks ago (July 17-20, 2013) at the Flying H Ranch in La Porte, 994249_10201599759138663_2035621459_nIndiana, which is the Hook’s family property. The Hook FAmily is a pillar of the community.

Wonderful volunteers in the Hook’s community pitched in to help create an awesome environment that is geared towards having fun and just being yourself, despite the challenges of FA.

There were many activities to participate in: yoga, tie-dying t-shirts, fishing, mosaic tiling, swimming, socializing, card playing, music entertainment, firework display, launching of Chinese lanterns, Ice-Cream machine to make cones, and the meals were FAbulous.

Flatbread & Fisherman's Fundraiser

FARA is moving in the right direction.

 

I feel each day we hear of yet another breakthrough. We are coming closer and closer to the cure. As I wait, I do all I can to help FARA keep going by fundraising and raising awareness.

On Tuesday night, I had a "Flatbread & Fishermans fundraiser for FARA". Flatbread restaurant, which serves organic brickoven pizza, has a weekly charity night. A portion from the sale of pizza goes to FARA. A friend of mine donated a keg of "Fisherman's brew" which the entire proceeds from that sale also go to FARA. My uncles played some great tunes and my aunt belted out a few songs. I was rolling around from table to table checking out everyone’s pizza!

Throughout the night I saw a lot of family and friends, a lot of coworkers and neighbors, and a lot of other families affected by FA. As always it was a great time.

Springfield Outback Fundraiser

As my mom and I drove home from a recent fundraiser, I used my iPad to capture the day in words, and couldn't help but smile. I was filled with this overwhelming sense of pride and hope. The fundraiser luncheon at the Springfield, Virginia Outback on June 8th, 2013 was nothing short of amazing. The amount of support that FARA has from the community, as always, is unbelievable, and the drive and determination shown by FARA's staff is rarely ever matched.
This event was attended by all of FARA's six-person staff and board members. Apparently, there was a board meeting in the city of Springfield, so all the members were able to attend the fundraiser. This rarely, if ever, happens and I certainly have never been to a fundraiser where all of the FARA staff were present. They are routinely so busy being spread so thin attending other events, it is not unusual to see only one or two at each event. This a great problem to have, I think. It's a testimony to how many fundraisers there actually are. The more fundraisers, the bigger the chance of any treatment and a cure, and this gives me hope.

Adventure Day

All 2013My experience of the FA community is that everyone is very welcoming. I guess this is so, in part, because FA is so rare, everyone is happy to invite another one in fifty thousand to the table.

So the bond is strong, but we do not know everyone. We need to be intentional in developing our community. I worked, for over ten years at a non-profit called Project Adventure (PA) whose aim is to provide experiential learning and adventure experiences to groups to help them grow (develop goals, promote community, etc.). It took me some time to realize that, like FA Woodstock and other awesome things people do that I don’t know about, I could do the leg work to provide a community building experience for FAmily. So, last year in April we had our first FA Adventure Day, we just had our second. Both days were awesome!!

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