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10th Annual McDonnell Music Festival

10McDonnellMusicOn the same weekend in September for the last ten years the McDonnell family has hosted a benefit concert/raffle to benefit FARA. For the past 9 years it has been held at the same venue in a small town in upstate NY called Queensbury. Now the McDonnell's son Dylan,38, has FA, but this event draws out the entire town. Not only to support Dylan, but to cut a rug with their favorite cover band The Marcabes. Not only does this band feature Dylan's uncle on guitar, but his father Dave on lead vocals. They have been playing together since High School, and playing well. Now it's quite a sight to see a dance floor full of 50-80 year old locals dance and twist the night away. This was my 3rd year in a row attending this event and everyone made me feel so welcome. From a cinematographer from PEP (the patient experience project) letting me fly his DJI drone, to the band My Time inviting me on stage to sit in on guitar. I am looking forward to next year’s event already. 

Slim's Journey

SlimsJourney 2017 1

Saturday, September 23rd, 2017, ’Slim’s Journey FARA 5k run/2.5k walk’ was held in Warrenton, MO at The College United Methodist Church for its 6th annual benefit for FARA (Friedreich’s Ataxia Research Alliance). This was my second consecutive year participating in this journey and as last year, it was a memorable experience. My Team ‘Gotta Have FAith’ grew by 11 people from last year to this and I hope each year this event is held, my team will keep expanding. 

Pizza, Golf and an Award Winning Documentary

Flatbread Fuzzy Ataxian 1I am not eligible to participate in many of the clinical trials due to my progression and heart problems. The only way I can give back to FARA is through fundraising.

For the 7th year I hosted a benefit at Flatbread Pizza in Bedford,MA. A portion of their pizza sales that night were donated to FARA while Sixpoint Brewery donated a keg and the entire sale goes directly to FARA. At the end of the busy night Flatbread Co. wrote out a check to FARA for $1,200.

This was a difficult time for me to have a fundraiser but Michael would have had it no other way. My uncle Michael lost his battle with cancer two weeks before the event. Although he lost his battle, I knew he would always be behind me through my battle. In his obituary he requested donations be made to FARA in his name. This was the first event of mine Michael has ever missed but I know he will forever be fighting with me. 

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. 

2017 Global Genes RARE Patient Advocacy Summit

2017GlobalGenes 1I was excited to go to my first event as an ambassador for FARA. Coming up to Irvine from San Diego only took about an hour and a half driving. I went with my sister so she got to experience this wonderful event with me.

On the first day we went to every single booth to introduce ourselves and find out what they are doing for rare diseases. I hadn't heard of any of these diseases before this event. They showed us how they are helping rare diseases. Some of them were about finding a way to treat these diseases, and eventually find a cure. Some were about the different ways to find a genetic diagnosis. And there were some about living your life despite your situation.

After learning about the different booths, we went to the Expos. Where they would talk about what they are doing in drug development and some people were talking about how they live their life despite a rare disease. Those were the most appealing to me because some of these people had a unique case from where they are the only one in the world with that rare disease because they have no hope they have to live the best life that they can. 

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