rideATAXIA Philadelphia, FA Symposium Offer Opportunities to Connect, Raise Funds

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by Matt Lafleur |

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“Man, I didn’t realize how great it feels to be in the same room with friends,” I thought late one night as my friends Kayla and Mike were leaving. I hadn’t seen them in over a year due to the pandemic, and in that time, they’d gotten engaged.

When they came to my house that night, they asked me to be in their wedding, which is an honor. We also watched “Mulholland Drive,” a 2001 cult classic film I hadn’t seen before. True to its director, David Lynch, the movie was strange, unnecessarily complicated, and impossible to understand after only one viewing. I loved it.

As Kayla and Mike, who failed an escape room with me before lockdown, closed the door and I heard them drive off, I basked in a feeling of contentment. I know that the isolation brought on by the pandemic is difficult for everyone, but I had never considered its impact on me personally.

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I’ve written before about how rare disease patients are uniquely adapted to life in pandemic isolation. As a patient with Friedreich’s ataxia (FA), missing opportunities to hang out with people and gather in crowds seemed to suit my introverted self just fine. But after my friends left following a night of philosophical conversation, a good movie, and lots of laughs, I realized how important connecting with others is.

Living in isolation should never be forever, whether during a waning pandemic or in life with a disease, disorder, or disability.

To my fellow FAers, whether you’ve been feeling cripplingly isolated or relatively unaffected by the pandemic, there is an opportunity to gather with others in the FA community during the second weekend in October.

The Friedreich’s Ataxia Research Alliance (FARA) is hosting a weekend for the FA community that will take place in Philadelphia, featuring three incredibly important events.

The first one, on Saturday, Oct. 9, is rideATAXIA Philadelphia. Those who sign up can participate by either cycling a 50-, 25-, or 6-mile course, or by cheering for the riders. Funds will be raised to support research for new FA treatments and a cure.

The rides begin in the morning, but everyone will gather at noon for a delicious meal provided by Outback Steakhouse. This is a great way to meet people and create fellowship with other folks who are affected by FA in a positive and fun atmosphere. (I recommend trying the root beer and milkshakes.) Sign up here to register.

On the next day, Sunday, Oct. 10, FARA will host the national FA Symposium. This is a chance for everyone to hear about the latest scientific developments regarding Friedreich’s ataxia, and to meet and engage with some of the world’s most prominent FA researchers.

Even if you can’t make it to Philadelphia, the conference will be livestreamed so you won’t miss any of the important talks, wherever you are. Register here for the FARA Symposium, whether you’ll be attending in person or virtually.

Finally, on Monday, Oct. 11, FARA Ambassador training will take place. Members of the FARA Ambassador team, a group of patient volunteers, will attend this workshop to learn about the drug development process and how to best represent the community. This workshop is not open to the public, but for more information about the FARA Ambassador program, including how to join, visit the FARA website.

In addition to this lineup of prominent speakers and engaging activities is probably the most important aspect of the weekend: the chance to engage in person with others in the FA community.

I learned firsthand that being by yourself too long is not an ideal way to live. So go cycling to help raise funds for a cure, cheer on the riders, enjoy a milkshake, gain insight into the fascinating science of potential FA treatments, get to know some of the top FA researchers in the world, and most importantly, meet and laugh with other members of the FA community.

I hope to see you in Philadelphia in October. May the experience serve to remind you how good it is to hang out with others.

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Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.

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