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FARAFARA Cure FA

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!!

The first year I didn’t know what to expect I thought it would be good and really fun—it was amazing.

This year I knew what to expect—awesomeness. I wasn’t surprised. Some new friends joined us and we had folks in power wheelchairs to folks who can walk independently. There were fourteen of us Jamie & Tom with FA, ranging in age from 15 to 50. We were joined by about 25 of our family, friends and loved ones.

While I am running the logistics of this day and also a participant I can get distracted by the flow etc. and not just enjoy the process. That said, there were many smiles, hugs and animated discussions for a ninety plus degree day. I did notice that. Laughter, lots of laughter was on Project Adventure at Moraine Farm’s patio and playing fields that day.Tangled

One of my exchanges in particular (during one of the oversized playing card activities we did) stood out. A mom of someone with FA said, tears rolling down her cheeks, something like: “I wish my family didn’t have to deal with FA, but if we didn’t, we wouldn’t know all you amazing people.” That is exactly how I feel. FA is an everyday struggle I don’t want and am committed to no one else having. And while I like to think I have always appreciated life, this community I am part of really helps me love life. I feel like the adventure experience we have amplifies that.Patrick & Alex

In the afternoon we did some high challenge course elements, the Zip Wire and the Flying Squirrel. I think folks know what a Zip Wire is. The Flying Squirrel is basically the rest of your group hauling you up twenty feet (yes all harnessed, helmeted and safe) this can be straight up and down or swing a lot, it is the call of the person going up. Both this year and last I have been blown away by the impact of the high elements on our little group. All the participants with FA zipped and several zipped and did the Flying Squirrel. It is hard for me to express in words the experience of seeing a friend who has a personal care assistant and uses a power wheelchair joyously zip. I can’t do it justice, but you can probably imagine. Donovan I know PA worked really hard to have us be able to Zip safely. I have to say I was never worried that we’d be unsafe. None of the participants seemed to me to be concerned about our safety, even one of the FA moms who is a notorious worrier. I have a friend who has or had, rather, zipping on her bucket list. She had even called around to different places and was told she couldn’t zip because she couldn’t climb. She was Erin Zippingthe first one to do the Zip Wire that day. Such a smile, so much deserved pride expressed in that smile. Then she told me something like: “Who would’ve thought a little girl in a wheelchair, like me, could do that?” I had to say (paraphrasing): “I knew you could because you live by yourself, work a full time job and never forget to love life. That’s a lot harder and not always so fun.”

I left the day with overwhelming gratitude…grateful to: • Our facilitators (Bill Cuff, Tim Churchard, Mellissa Hannon, Jim Schoel, Peter Aubrey and my amazing brother-in-law Yew Cheong Tham) • PA, everyone on and off the scenes who made it happen (www.pa.org) • Woody & Ingrid Barr for all the amazing pictures capturing that day • The FA Project (www.thefaproject.org) and Affairs Catering (www.affairscatering.com) for helping us pay for meals • The Unlimited Possibilities Foundation for underwriting the day (www.updoitnow.com).

Mostly I am grateful that I am part of the FA community and am surrounded by these amazing people I can only begin to describe.

Oh, I can’t forget this because it is huge! While we were having fun, Jen Farmer, Dr. David Lynch. Lauren Seyer and Nat Greeley were collecting Jamie Zippingsamples for FA research from over 50 people. Since they were nimbly able to come to where the people with FA are, they were able to collect enough samples to equal 8 months of people going into the clinic.

This day is definitely not exclusive (except you have to be FAmily), but openings are limited. If you’d like all the information about next year’s FA Adventure Day, email me at jean@sparkhope.org

Jean

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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