Virtual NorCal rideATAXIA 2020
rideATAXIA is an international program that brings the Friedreich’s Ataxia (FA) community together every year in different locations across the country and even the world for a cycling event. It’s an amazing program! In addition to creating a sense of community, rideATAXIA aims to raise awareness and funds for research to treat and ultimately find a cure for FA. It is organized by FARA (Friedreich’s Ataxia Research Association). Usually there are events in Chicago, Philadelphia, Gainesville, Dallas, SoCal, and NorCal as well as Australia and Europe so it is truly international! In past years lots of our friends and family would join us to bike ride 10, 23 or 52 miles (yes, 52 miles up hills) for the NorCal event held in Winters, California. Some would just walk a mile or do a run if they aren’t cyclists. Everyone would spread awareness as well as seek sponsors or donations to raise funds for research. It is too far of a distance for me to walk with my walker so my aunt and uncle pushed me in a wheelchair last year so I can be a part of the event and also reach out to sponsors. This really means a lot to me! I’m also very proud of my brother, Zack, (who also has FA) who rides his recumbent hand-cycle (23 miles last year!) as a leader of the team! Everyone says that the actual bike ride is super fun! The course is flat (except for the one for the 52 milers), through the countryside and around orchards. It’s a well-supported ride with people there to help you with anything you need for your bike which is super nice. And they have volunteers at pit stops for the riders with water, sport drinks and yummy food to help keep them hydrated and energized.
The COVID-19 pandemic has affected our world and life this year. rideATAXIA was no different – it also had to be changed to help keep people safe and follow the guidelines. Although it was disappointing that we couldn’t participate in person and with each other, FARA supported a virtual event during the whole month of May. All of my team: “TEAM HENNESSY'“ participated by biking, walking, running, or doing other physical challenges on their own. Since I can’t walk or ride, I did all of my special exercises and added 10 squats a day (with help, of course) as my challenge. (May not sound like much; but for me it’s tough!) One member did sit-ups every single day until she reached her fundraising goal! Zack rode his recumbent hand-cycle about 150 miles during the month of May (he turned it into a stationary bike and rode on his balcony!) Everyone did whatever they could and got so creative during this unusual time to help more people understand about FA. This helps to raise the funding needed for research to find a cure for this rare disease which unfortunately has no current treatment.
Usually when the event is held in Winters, California, we are so lucky to be treated to a barbeque feast donated by Outback Steakhouse which is delicious and such a fun time. Kyle Bryant, a leader at FARA who has been the inspiration for this annual event, lets us all know anything new in the areas of research, and he acknowledges all of the teams who work so hard to help move the science forward. After that we always meet up at Berryessa Brewing Company right there in Winters to talk with each other, meet other FA friends and families and relax while enjoying a great beer (or wine) at their really fun outdoor location. (You should visit if you are ever in Winters!)
This year, FARA held a virtual Zoom wrap up so all could hear any news and celebrate the various teams’ successes. Not quite as much fun as a BBQ and a beer, but it was a great way to see the results of the event!
This year I raised $1200 and our team raised over $7500!!!! –what a great job TEAM HENNESSY!! This event is an important opportunity for us to share our story and every donation, no matter how small, helps show support for me and Zack as well as the many others suffering with this rare disease. I really hope that next year we can do the ride in person and anyone is welcome and encouraged to participate. My link is still open for this year, and I would be so honored if you might like to help by donating. Kelly’s link
If you are new to my blog, and would like to know more about Friedreich’s Ataxia, please read my post “What is Friedreich’s Ataxia?” link which will give you a peek into this part of my life.
With gratitude,
Kelly
