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Welsh Bash in the Backyard

The Welsh Family (Pete, Francine, Brendan and Eilish) held their 8th annual "Bash in the Backyard for FARA" fundraiser on Friday, August 8th. The event was designed by the hosts to convey the need for FA research, but with a party atmosphere. Pete’s skills from his days as president of the Alpha Phi Delta Fraternity in college lent to the “beer bash” theme. Francine throws her business skills and expertise into the mix and gets area businesses, family, neighbors, friends, and coworkers involved to make this a true community event. They were blessed with perfect weather and even the "Supermoon" showed up for the event! They had close to 200 guests at the event this year which has been held every year in the Welsh's back yard. Guests this year included some from as far as Florida! The Welshes do infringe a bit on their very generous and hospitable neighbors' back yards as well. The yards are scattered with party tents, chairs, candles, party lights and surrounded by twinkling luminaries.

Ride Ataxia Seattle

Ride Ataxia is an event that I look forward to every year. It is a chance to raise awareness for FA, raise funds for FA research, and give hope to FA families who would otherwise have none. Not to mention the fun that we always have!

In 2012 and 2013, Portland’s own Sauvie Island was host to Ride Ataxia in the Northwest. These two rides were a huge success, as many pedal strokes were taken to move towards a cure. After a long debate, it was decided that Ride Ataxia Portland would become Ride Ataxia Seattle in the Summer of the following year.

FA Woodstock and Ride Ataxia Chicago 2014

imageThe 5th annual FA Woodstock was held Thursday, July 17, 2014 – Saturday, July 19, 2014. It is a three day event hosted by the Hook Family at The Flying H Ranch in La Porte, Indiana who graciously open their home up for people affected by Friedreich’s Ataxia (FA) and their families to enjoy a variety of activities. The 21 acre ranch is home to lots of livestock including cows, horses, a mini horse, bunnies, a goat, a pig, mini donkeys, dogs, a bird and probably a few more species unmentioned. The Friedreich’s Ataxia Research Alliance (FARA) and The Children’s Medical Center of Philadelphia (CHOP) staff came out to the event to conduct medical research that would usually take half a year to collect.  

FA Adventure Days 2014

This is the third year in a row I have hosted/made possible FA Adventure Days. I try to make them a way for people with FA and their friends/family to connect, have fun and take on new challenges. As the day approaches, each year, I get nervous and wonder what I was thinking taking it on. Then, the day (or for this year, days) happen and I know exactly why I did it. This year, like past years, new folks were introduced to the FA community and we took on new challenges. I meet new FAmilies, reconnect with old friends and have fun. FA Adventure Days are always great for me, but I wanted to use this blog as an opportunity to see what it meant for some of the other participants…

Day One (Each of the two days had a different group of participants.)

Flatbread Pizza: Race for Matt and Grace

Being someone with FA, I should be, but never am prepared for the support and caring I feel from everyone at a FARA fundraiser. The Flatbread’s Pizza kickoff to the Race for Matt and Grace in Providence, RI last week was no exception. 

My husband, Dave, and I get in the car to pick up our friends, Erin and her aunt Maureen. I don’t know how, but we are late half the time…I call it FA time (even though other folks I know with FA are always on time, I like to blame it on FA). So we are twenty minutes late (or not late for FA time). Of course Erin and Maureen were very gracious about our tardiness. Erin may have FA, but FA time is not one of her symptoms.

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