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FARAFARA Cure FA

The Blackburn Challenge

We did it! Our friend Tim and I paddled twenty miles around the coast of Gloucester, MA in The Blackburn Challenge. The Blackburn is named after a nineteenth century fisherman who paddled his dory sixty miles to land when he became separated from his vessel. Dave, Jean and Tim. Dave, Jean and Tim. He even purposefully froze his hands to the oars so he could keep on paddling. Check out www.blackburnchallenge.com for more if you’d like. Tim thinks, and I agree, that Blackburn is just like those of us fighting FA…loving life, staying strong, and not quitting despite a tough prognosis. While we paddled, my husband Dave was our crew. We couldn’t have done anything without him. In many ways, and I am not belittling my accomplishment, I was enabled by Tim and Dave.

 

This was Tim’s idea. He and Dave’s other college friends have been amazingly supportive of my efforts to raise awareness of Friedreich’s ataxia and funds for FARA. Our first step was to figure out if it was doable. So we tried it. Tim borrowed a two seat kayak. Dave and Tim loaded boats on and off the car; helped me get settled on the beach and helped me get seated in the boat. On our first try Dave gamely joined us in Tim’s kayak. When we left for our first trip the sea was calm, coming home there were waves. Nothing scary to me, but the one hour trip Tim had planned turned into three. I found I could not paddle and keep my balance in the waves. So our first trip was lots of paddling for Tim and Dave. As for me, I got to enjoy the waves and the scenery. It was a great day and I was psyched for the Blackburn.

We tried another borrowed boat, this time of the sit in variety. I have to say that I was worried about the sit in boat because I didn’t feel confident about getting out should the boat roll. This boat, something to do with the back support, didn’t offer me the stability the first one did. I am not a good swimmer anymore, but having waterskied last year (loved it & recommend it to water lovers) I knew a good life vest would do most of the work if I went in. I was also raised swimming and boating so I had a big layer of comfort there! Dave and another friend went out to breakfast this time. So an hour or so later Tim and I knew it was the first boat and Dave had his stack of blueberry pancakes.

Tim loves ocean kayaking. I think he’d do it twenty-four seven if he could. He also grew up in Gloucester and is a marine biologist. So our journey was speckled by Tim educating me about Gloucester and the ocean. For example, during the perfect storm (read more here) a coast guard boat was headed into a break wall we passed. The boat would have capsized if they had hit it. A monster wave carried them safely over it.

Really, for me, the day was fun. I paddled about 60% of the time doing about two strokes to Tim’s eight. He kept saying every stroke I did helped. As much as I tried to concentrate on good oar strokes, they were not good, but I helped. This is hugely important to me. I do not enjoy being a passive part of things I do. Sometimes I feel FA has made me passive where I want to be active. So, when Tim presented me with and Dave supported me in this effort to be active, I jumped on it. It gave me another very empowering opportunity to raise funds for FARA. Fun, active and empowering …I’ll take it!

Back to people enabling those of us with Friedreich’s ataxia… My sister Lisa always reminds me that letting others help me is often a gift for them. Sometimes you (gracious receiver of help) are giving more than you are getting. I am very grateful for the gift of this day Tim & Dave gave me. I hope I was gracious and they got as much out of helping me as I got out of being helped.

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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