In Search of Peace, Love, and a Cure for FA

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by Katie Griffith |

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Hello, everyone! I am so grateful you are taking a few moments of your day to join me here. I hope you can spend some time reflecting on happier days in the past and looking ahead toward a brighter future. Even if your current reality feels overwhelming, please know that things won’t always be this way.

I love our Friedreich’s ataxia (FA) family. It’s always a special time when we can gather in person and be truly understood by those who walk the same road we are on. Remembering the loneliness I felt when my son Noah was diagnosed a few years back always makes me feel so thankful to be part of such an amazing community.

A few weeks ago, I attended my very first FARA Energy Ball with Noah. The FARA Energy Ball, sponsored by the Friedreich’s Ataxia Research Alliance, is an amazing fundraiser founded by Paul and Suzanne Avery that has taken place in Florida’s Tampa Bay area since 2009. Noah and my husband, Brad, attended in 2019, so I had an idea of what to expect based on their stories. I’ll admit, I was blown away when I experienced it in person.

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It’s hard to understand the magnitude of this event until you see it with your own eyes. The venue was massive, every detail was carefully thought out, and the people were generous. No, really, so generous that $1.6 million was raised in one evening!

Living day to day with FA can be discouraging. But as we learned at a symposium held the evening before the ball, many exciting advances currently are underway. Thanks to pharmaceutical companies and the work of FARA, we are finding ways to slow down and reverse the disease we all hate so much. There is hope for the future, and it was encouraging to be reminded of it.

Being surrounded by such a large group of people, many who had no personal connection to FA, was surreal and a bit overwhelming for an introvert like me. Knowing that we all share the same goal of finding a cure for these brave FA warriors whose lives are affected every day, and in every way, brought tears to my eyes.

The theme of this year’s event, “Peace, Love, and the Cure,” perfectly captured my feelings about that weekend. I am sometimes overwhelmed by emotions when I think about how FA affects my son and many others whom I have come to know and love. I left the ball feeling an inner peace in knowing that while FA is out of my control, there are brighter days ahead.

The love in the room was tangible. So many people selflessly gave their time, talents, and other resources to make the event happen in search of a cure. There are no words that can adequately express my gratitude.

One of the lessons I have repeatedly learned from this community is that we are resilient, and we must keep going. The future is bright. I can’t wait for the day when we can say, “Peace out, FA!”

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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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