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FARAFARA Cure FA

2017 FA Adventure Day

2017AdvDay 1

"I'm ready!" I yelled to the crowd below me, as they pulled me up to the highest point the cords would let me go. I sat in the adaptive harness, which made me feel like I was a queen on a throne. I took one last breath before they released the cords and let me plummet down. As the wind and the trees ran by me I let out a little scream and began swinging back and forth. It was absolutely exhilarating! The feeling of effortlessly flying back and forth is so freeing, especially to someone who has been living with limited mobility for years. And after a day filled with positive team-building exercises, in that moment I felt like I could do anything. 2017AdvDay 2

My name is Allison Bouchard and my sister Noelle and I both live with Friedreich’s Ataxia. We live in Maine, which unfortunately limits the FA related events we can take part in. Since 2015 we have been attending the Spark Hope FA Adventure day event in Beverly Massachusetts put on by the team at Project Adventure (www.pa.org), Unlimited Possibilities (updoitnow.org), and Voyager Therapeutics (voyagertherapeutics.com). Over the past 3 years we have participated in collaborative learning and problem-solving activities, along with the thrill-seeking challenge course stunts in which we fly through the air. 

Every year since we have been going seems to take a little different form than the year before -- we zip-lined off a platform that was about 40 ft in the air in 2016. (Yes, there is footage of that!) In 2015 we had to very strategically balance about 20 people on two large boards without tipping over. The most challenging activities tend to be the team-building day activities, because they usually emphasize the need for communication and being able to adapt quickly in certain situations -- which is an integral skill to have when you live with FA. From experience, I can tell you that this is a great event to go to to get to know people in the FA community.

2017AdvDay 3Adventure day has proven to be a very important event to us and to other ambassadors and members of the community. This year in 2017 the second Adventure Day which was supposed to take place on Tuesday 8/22, was cancelled due to lack of attendance. That really needs to not be an issue in the upcoming years, because this event is so meaningful to us and it has potential to be very crucial in other people's lives. It's truly a unique experience when you push your boundaries right to the limit, sometimes with people that you barely even know, and when the day is over you feel like you've made lifelong friends. I think that every member of the FA community deserves to feel that way. Thank you for reading this; I hope this helps spread the word about the awesome event that is Adventure Day.

If you want to find out about next year’s Adventure Day, email Jean, jean@sparkhope.org.

Along with our sponsors above, we need to thank our amazing, kind, and empathetic volunteers, for making the day happen, in no particular order: Samm Cummings, Bill Cuff, Joyce Cuff, Terry Cuff, Greg Urban, Josie Martin, Jan Karssens.

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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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