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FARAFARA Cure FA

2015 FA Adventure Day

2015FAA1This year it was my honor to again host the FA Adventure Days. Every year as the day grows nearer and the intensity of the organization I need to do to make it happen increases, I wonder why I committed myself to it and/or whether or not I overcommitted myself again. This felt especially true this year.

But guess what? Just like every other year, the day happens and I know exactly why I did it. People traveled a good six or seven hours and stayed in hotels just to spend the day with us. Our FAmily is amazing! One day my dad hit it right on the head. He said: “it is a community you never want to be part of (because it means you or someone you love has FA), but it is an amazing community.” 

 

So, for those who don’t know, the Adventure Day is a combination of fun activities designed to: enable us get to know each other, enable us to solve problems, enable us to trust each other (or trust each other more), and enable us to take risks. It was mostly FAmily and facilitators as usual, however we were joined by two of the scientists from Voyager Therapeutics who are working on gene therapy for Friedreich’s ataxia. It was an awesome day with so many fun/meaningful things for me to talk about. So, I am just going to focus on one activity that really meant a lot to me. It is called willow in the wind (by me at least, these activities go by a lot of different names).

2015FAA2Willow in the wind is an activity in which one person stands in the middle of a tight circle of people and, keeping their body rigid, is passed around the circle. Everyone in the group on the outside is supporting the person as they go around the circle. The person in the middle has their feet on the ground, but is leaning and trusting the person behind them to keep them held up. As you can imagine this activity requires a lot of trust on the part of the person in the middle and responsibility on the part of all the people on the outside. It is important to note that with all Project Adventure activities no one is forced to participate in anything they’re uncomfortable with. What that means practically is that if you’re attending Adventure Day you’re expected to actively participate, but you choose the way in which you participate. So no one is EVER forced to do anything they do not want to do.

So this is where our awesomeness comes in. I don’t know if my words can do it justice. I am becoming teary-eyed just thinking of it. Those of us with FA participated just like anyone else. Some of us stood in the middle with our wheelchairs (or other mobility device if needed) pulled out of the circle while we were supported by everyone. Some of us stayed in our wheelchairs but let the wheelchair be tipped far over (think head almost touching the ground, without tip bars on). Some of us sat on a big fitness ball while being passed around. Then, we helped keep our FAmily propped up. We helped them and they helped us. This is really how it is, to me at least, it is a very mutual thing although people often think that those of us with the FA are helped more than we are helping, that doesn’t seem to be the way it really is. This activity made that so obvious to me. I don’t know if my words are explaining it well, but maybe some of the pictures here do.

2015 FAA3I asked a few people to give me their impressions of the day only one person was able to do that in the time frame I needed. My friend Bob O’Neil, whose daughter Erin has FA wrote this: Every year I attend Project Adventure I am amazed by the team work that the FAmily exhibits to complete the task at hand. This year we needed to balance 11 FAers in wheelchairs and their teammates on two separate 12 foot X 6 foot seesaws. I was skeptical at first as was Erin, but we did it. Both teams on seesaws balanced for 10 seconds multiple times to fulfill the task.

TOGETHER WE WILL CURE FA!

The FA Adventure Days were sponsored by: Project Adventure; The Unlimited Possibilities Foundation; and Voyager Therapeutics. As usual we had some awesome volunteers, drumroll please, Lisa Howard, Nate Folan, Greg Urban, Bill Cuff, Tim Curchard, and Sam Cummings. Thanks to everyone for making these days happen. I believe they are priceless.

Project Adventure has committed to future for FA adventure days. So, we know they’re coming we just don’t know when. Email me if you would like me to let you know when they’re happening.

JeanWalsh2015JeanWalshsignature

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are 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 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.

 

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