Extending the invitation to our first live roundtable discussion about FA

Join us to learn more about treatment, research, and life with Friedreich's ataxia

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by Matthew Lafleur |

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Friedreich’s Ataxia News proudly presents “Beyond the Friedreich’s Ataxia Basics,” a live, virtual roundtable discussion taking place at 6 p.m. EST Nov. 1. This free event is open to all audiences — patients, friends and family members, caregivers, medical professionals, and anyone curious about the current state of the Friedreich’s ataxia (FA) community.

Among other topics, including the diagnostic process, daily management, and financial considerations, the panel will discuss Skyclarys (omaveloxolone), the only therapy that’s been approved by the U.S. Food and Drug Administration for the treatment of FA. Until Feb. 28 of this year, my disorder was considered untreatable, so it still seems incredible to me that an approved therapy exists.

Special thanks to Reata Pharmaceuticals (now owned by Biogen) for developing the drug, supporting this live event, and giving Friedreich’s Ataxia News editorial privilege so that the discussion remains honest and authentic to the FA community.

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I’ve been on Skyclarys for nearly 5 years. Here are my thoughts.

Introducing the panelists

Two patient advocacy superstars, Andrew and Esther Schorr, will host the discussion. Andrew was diagnosed with chronic lymphocytic leukemia in 1996, which led him and his wife to found PatientPower, an organization focused on empowering patients and care partners.

Andrew and Esther will lead a panel of three powerhouses, plus me.

One is a person I haven’t yet had an opportunity to meet. Financial expert Kelly Piacenti oversees the SpecialCare program at MassMutual, which offers financial and life-planning services to families and caregivers of people with special needs. Approximately 95% of rare diseases have no treatment, and the therapies that do exist often come with a heavy financial burden. Piacenti’s expertise is essential to the FA community as we navigate the brave new world of treatment, which can be overwhelming.

The second powerhouse is world-renowned FA expert and neurologist David Lynch. Lynch obtained his MD and PhD in neuroscience from Johns Hopkins University and now serves as an attending neurologist at the Children’s Hospital of Philadelphia and director of its Friedreich’s Ataxia Program. In other words, he’s wicked smart. We are lucky to have David, one of the most knowledgeable FA experts in the world, on this panel.

Expect him to go “beyond the basics”: Instead of simply defining FA, he’ll talk about FA diagnosis and the importance of early intervention, some specifics on Skyclarys, and other strategies used to manage FA, as well as what the FA community can anticipate.

The third powerhouse panelist pulls no punches with her plentiful personal passages. Kendall Harvey is the most veteran current columnist at Friedreich’s Ataxia News, starting several months before me in 2018. (Our CEO calls the time before me “the peaceful years.”) In “My Darling Disability,” Kendall shares her unique perspective as a late-onset FA patient, wife, and mother, beaming with unquenchable optimism and stunning hope.

Lastly, not a powerhouse but a haunted lighthouse, I will be the other patient panelist and offer my experience as someone who was diagnosed with FA at 9 years old and transitioned to a wheelchair at 18. My journey to accepting FA has been slow, marked by literature and mental health counseling degrees, friendships, and singlehood, as well as trying to remain physically active, becoming more involved in the FA community, and writing this column, “Little Victories.”

You’re invited to join

The reason this particular column pretty much sounds like a commercial is because the roundtable event has the potential to help propel FA research forward. If a large audience attends, perhaps more researchers and drug developers will invest in this rare disease, and new treatments (maybe even a cure) will be on the horizon. Help show that compassion for those living with FA isn’t as rare as the disorder itself.

Participating in this panel is an honor I couldn’t have imagined in my younger years, when surviving with FA was the extent of what I believed to be possible. Life takes us to unpredictable places. I’m reminded of my high school graduation quote by American poet Carl Sandburg: “I am an idealist. I don’t know where I’m going but I’m on my way.” I’m not sure how I ended up on a panel among these remarkable people, but somehow I’ve stumbled my way here — and I’m so grateful.

Please register on our site and join us on Nov. 1. Maybe you can be part of finding a cure for FA. I promise you’ll learn something new — plus, you can play a drinking game around how often I say “um.” (Warning: You would get wasted.)

Thank you. I can’t wait to see you there.

Note: 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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