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FARAFARA Cure FA

FA Adventure Day 2016

2016AdvDay1For the past five years I have hosted the annual Spark Hope FA Adventure Days. My thinking has always been, and remains, to have an event which is just about getting us, people with Friedreich’s Ataxia, and our loved ones closer together through a day of intentional and fun activities. But, of course, our FAmily is much bigger than that! Any member of the FAmily is welcome. So, in this blog I have included the voices of people who are not, strictly speaking, FAmily (but, of course, are FAmily). See what a day with us means to them. -Jean Walsh (FARA Ambassador)

The FA Adventure Days have been sponsored all five years by Project Adventure and The Unlimited Possibilities Foundation. For the past two years we have also been sponsored by Voyager Therapeutics

By Alison Bouchard (participant with FA)

I've been going to FA Adventure Day since 2015 and I can honestly say it's an experience I haven't felt much before. Growing up with FA was difficult for obvious reasons -- physically, but also socially. Being affected has changed the way I relate to other people. Navigating around social barriers and trying to relate to others is sometimes a challenge. Spark Hope FA Adventure Day brings together all these wonderful like-minded and like-bodied individuals together in a supportive environment to work on team-building exercises.

We were put into two groups and were told to explain to each other how to build a bridge out of a selection of materials - without looking at each other do it. Then we were assigned different words that we would have to substitute for other words, as if to mimic a speech barrier. In the long run we ended up both building very similar looking bridges, it was really cool to actually see how well we did in the end. After that exercise, we went outside and travelled up the hill to zipline -- something I have never done before! We all flew across the line from a platform about 35 ft in the air, and it was incredible. I've always wanted to do something like that but I haven't had the guts to, until FA Adventure Day! It was an amazing experience.

FA Adventure Day is a very unifying and special experience that I am very thankful to have been a part of something so fun. Thank you Jean for making this available to us.

2016AdvDay2By John Connelly (Vice President of Program and Alliance Management at Voyager Therapeutics)

I recently had an amazing opportunity to spend quality time with people that, it is no understatement, are some of the most inspiring people I have ever met. I work for Voyager Therapeutics which is a gene therapy company focused on helping patients with severe CNS (central nervous system) diseases. Drug development is a long and hard process with many ups and downs throughout the process. Every once and a while you need a reality check on why we are doing what we are doing. Boy did I get one.

The opportunity to participate in the FA Adventure Day was first offered to me in June and I was happy to accept the offer. As the time drew closer I have to honestly say I did think about all the things I needed to complete at work and stressed over being out of the office for a day. I did however get in my car that morning and drove to Tewksbury for the activities. The only problem was the event was not in Tewksbury but was actually in Beverly. Seems I had hit the wrong button on my iPhone to get the address and next thing you know I was driving around a beautiful neighborhood in Tewksbury scratching my head thinking this can’t be right. Well I quickly realized my mistake and reprogrammed my GPS to the right location. I arrived about 15 minutes late and right in the middle of the first ice breaker. I was thinking “wow- this isn’t going to look good” but within one minute I completely forgot about all this. From the very first second the feeling of embracement was palpable. I quickly realized I was in the presence of a very special group of people. From the Project Adventure staff, the incredible volunteers, the families and friends, and most importantly the inspiring men and women who thrive despite the adversities they face. The day was filled with some challenges (we built a bridge in three parts without being able to communicate in a “normal” way), but the best part was the zip line. I had the honor of being on the dismount team so I had the unique opportunity to see the smile on the faces as they sailed by me and also to hear the words of excitement as we lowered them off the line. The day went by too quickly however I soaked in every moment of it. The smiles, the hugs, and the high fives will forever bring a smile to my face. Ending the day with a group selfie was just the icing on the cake. I remember getting in my car to go home thinking that this did more to inspire me than anything I could dream of doing at the office that day and I was very fortunate to participate.

In the weeks since that day I have sat with many of my colleagues to share my experience and as best I could (though really impossible) translate the inspiration that grew from every interaction, every smile, every hug, and most importantly every smile I was able to be part of that day. I can’t wait to see many of my new friends at future events.

2016AdvDay3

By Noelle Bouchard (FARA Ambassador)

Adventure day 2016 was amazing! There was a smaller group than last year, but it was still fun nonetheless. This year we had the opportunity to zip line, so obviously I went. I've never done that before so I was a little nervous, but everyone at Project Adventure made me feel safe, physically and emotionally! I can't wait to go on my next adventure day next year. This event definitely has you looking forward to the next as soon as you leave. Great bonds are made that day, with other FAer's, and staff. Everybody leaves being a part of the FAmily.

By Bill Cuff (Trainer all five years and board member of the UP Foundation)

2016AdvDay4Unlimited Possibilities has partnered with Spark Hope for the past several years to help provide Adventure Days for people who have Friedreich’s Ataxia. These days were the brainchild of Jean Walsh, a friend of ours who started Spark Hope to help raise awareness and funds for FA research and to create a greater sense of community for people with FA and their loved ones. FA is rare enough that some people who have it, never met someone else who has FA until they come to the FA Adventure Days. Jean had a sense of what might work since she has FA herself. And has it ever worked! While people are laughing, crying, and sometimes screaming as they fly down a 200 foot zip line or work together on a team problem solving challenge, they are also getting to know each other better and strengthening the caring community.

Each year those of us from UP come to the challenge course thinking we’ll do some good facilitating the process but then leave realizing a lot more good was done for us. Because each year this group makes us aware again of how to best live a life regardless of the challenges that are put in our path. I am humbled and inspired each time I’m involved in the FA Days. Thank you for continually showing me what is truly important in living.

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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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