‘Almost FA-mous’: The sky’s the limit for FA awareness
All kinds of exciting things are happening to boost awareness of this rare disease
I recently watched “Almost Famous,” a comedy film from 2000 that portrayed the fictional story of a music journalist and a rock band that longed for recognition. I didn’t expect the movie to remind me of the Friedreich’s ataxia (FA) community, but it did. That’s because we’re also a group that for years had remained in the shadows and yearned for understanding and acknowledgment.
Back when I was diagnosed with FA as a child, this rare disease wasn’t even well known in medical circles. Conversations about FA were often met with blank stares, wherever they happened.
Today, things have changed. FA is now in the spotlight, gaining the public awareness that people who have this disease have long deserved. Greater awareness increases the chances that more people will have access to treatment, and perhaps one day a cure.
A growing multimedia presence
One significant milestone on this journey is a television commercial recently produced by the University of Notre Dame that features an FA patient. This powerful commercial has brought the realities of living with FA into countless homes, fostering greater empathy and understanding.
The comedic world has also witnessed the emergence of incredible talent from the FA community. Fiona Cauley, who has FA, is making waves with her burgeoning success as a comedian. Her R-rated performances not only entertain but also challenge perceptions, proving that humor and resilience can coexist beautifully.
On a personal note, I co-authored a children’s book about being diagnosed with FA. The goal was to provide comfort and insight to young minds grappling with the condition. To my astonishment, it became a temporary top-seller in its category on Amazon, indicating a growing public interest in and support for FA narratives.
The adventures of my friends Kyle Bryant and Sean Baumstark have further amplified FA awareness. Their first documentary film, “The Ataxian,” from 2015, showcased the duo’s cross-country journey on recumbent trikes, inspiring many viewers like me. Now, their second documentary, “The Highest Road,” which is currently in production, chronicles their expedition as a six-member cyclist team ascending the highest paved road in the world, in northern India. Their story is a testament to the indomitable spirit of the FA community.
In a promotional story that will be published in February, the biotech company Biogen is sponsoring me to be interviewed by The New York Times. This is a monumental leap in bringing FA into mainstream discourse.
Beyond these individual stories, the FA community is also collectively making waves. Advocacy efforts have intensified in recent years with organizations like the Friedreich’s Ataxia Research Alliance (FARA) and the National Ataxia Foundation and celebrity spokesperson Bill Nye leading initiatives to promote public awareness and more resources for research.
The treatment landscape for FA is also evolving. In 2023, the U.S. Food and Drug Administration approved Skyclarys (omaveloxolone) as the first treatment for FA for people 16 or older. Other potential therapies are also being researched to halt or reverse the disease’s progression, such as cell metabolic boosters, frataxin protein replacement, and gene therapy. You can read more about these investigational efforts at FARA’s drug development pipeline.
As we journey from obscurity to recognition, I envision a cheesy but awesome film-like scene where the FA community and our supporters worldwide come together — just like the “Tiny Dancer” scene in “Almost Famous.” We’ll all sing in unison, knowing that we can find solace and strength in shared experiences, symbolizing our collective resilience and hope.
Dreams aside, the path is still challenging and filled with heartbreak and loss. But with growing awareness, advancements in treatment, and the unwavering spirit of the FA community, we are no longer “almost famous.” We are here, and we are being seen and heard. Our story is one of determination, hope, and the relentless pursuit of a brighter future.
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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