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2016 Century 21 Charity Golf Tournament

2016Century21GolfOn September 22nd, 2016, Josh Lamascus and his family held the 7th annual Century 21 Charity Golf Tournament benefitting FARA, in Fontana, California. Josh explains, “when I was diagnosed, we were hit with a wave of emotion and we didn’t know what to do. My dad called our family friend, Julio Cardenas. Julio runs a Century 21 office in Rancho Cucamonga, California, and they had held an annual golf fundraiser. My dad asked Julio if he would be willing to change the beneficiary of the golf tournament to FARA. Julio happily obliged and that’s how we ended up here.” 

5th Annual Slim's Journey

2016SlimsJourneySlim's Journey ~ A Journey of Hope

September 24, 2016 marked the 5th annual Slim's Journey: FARA 5K Run/2.5K Walk. This year was a significant year for us because we have been able to host this event with continued interest and support from our community, we have reached a $100,000 fund raising milestone, and 2016 was our highest fundraising year to date with over $26,000 raised. 

Although through this event we raise money for FARA and awareness of Friedreich's Ataxia, our event is about hope. Our hope comes from the knowledge that Jesus Christ is our Lord and Savior and through His sacrifice, we can all have eternal life. We all endure suffering of some kind but knowing we all have the option to press into our Heavenly Father is what we want to share with our participants. Each year, we include a scripture of hope on our event shirt. This year, our scripture was Romans 5:3-4 ~ "Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope." Sharing this message is of utmost importance to our family and serves as a reminder that this world is just temporary. Something much better waits for us.

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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

Whitewater Rafting with SPLORE

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I went on a Whitewater rafting trip, in Colorado, at the end of the summer with a company called SPLORE. We rafted down the Colorado River, camping out along the way, and going through pretty heavy rapids in Utah. This was my third time going on these trips. I can't explain, exactly, how special they are to me. I think everyone should give this a try, and step out of their comfort zone. SPLORE2016 2

Three years ago, on Facebook, my aunt sent me a link by SPLORE with an advertisement for an FA trip. I would stay two nights in a hotel in Grand Junction, Colorado and raft all the way into Utah. I would be camping four nights along the way, and heading into Whitewater on the final day. This really looked like an amazing adventure. I was hooked because it's not every day that you see something specifically for people with FA. I had never camped before and did not consider myself an outdoor person. Sometimes in life, you just have to let go and be adventurous. I pretty much knew everyone would help take care me if I got attacked by a bear or something.

Oktoberfest Party for FARA

FARAoktoberfest“Oktoberfest Party for FARA” was organized by Randy Sisulak and Bill Sabia as an addition to the Claxton Classic Golf Tournament.

Beer lovers gathered together to raise funds for FARA on September 10th. This was the second year FARA was the beneficiary of the Baltimore Leinenkugel Beer Garden, the only Leinenkugel Beer Garden in the country. For a $5 donation, guests enjoyed discounted food and drinks, participation in raffles, door prizes and drawings.

This year, $600 was raised and 100% of those funds will go directly to FARA. Randy says, “Although this event is not a big money maker, it is an opportunity for folks to gather in a relaxed atmosphere and ‘just hang out’ while raising a donation and awareness for FARA. Introducing folks to each other who have a common interest in FARA is the highlight of the event.” 

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