BioNews, Inc., hosted a first-ever live webinar on its website Friedreich’s Ataxia News, highlighting the challenges of living with Friedreich’s ataxia (FA), strategies for success, and recent changes in the treatment landscape.
Panelists included Kendall Harvey and Matthew Lafleur, both of whom have FA and write columns for Friedreich’s Ataxia News, alongside leading FA expert David Lynch, MD, PhD, who has been studying the rare neurodegenerative disease for more than two decades and is currently director of the Friedreich’s Ataxia Program at Children’s Hospital of Philadelphia.
Along with hosts Andrew and Esther Schorr, founders of Patient Power, the panelists covered a range of issues including the diagnostic process, treatment and symptom management, lifestyle and day-to-day management of FA, and managing finances with FA during the Nov. 1 webinar.
In the final portion of the event, Kelly Piacenti, head of special care planning at insurance and financial services company MassMutual, joined the panel to offer financial advice for those living with FA.
“Finding beneficial resources about my condition is very rare, so it was an honor to be part of this live webinar, providing medical, financial, and experiential understanding of FA. This event was a unique way to empower the FA community,” said Lafleur, who is the Associate Director of Patient Engagement at BioNews.
FA is a rare, inherited, progressive disease that primarily affects the nerves and muscles. Named after the German scientist who first described it, FA causes loss of control of body movements (ataxia). It typically begins in childhood or adolescence and worsens with age. FA is estimated to affect approximately 1 in 50,000 people worldwide.
In the post-event survey, feedback from people living with FA, their caregivers, and healthcare providers showed that 90% thought the webinar was helpful, with the segment on treatment and symptom management scoring the highest.
About BioNews
Founded 10 years ago, BioNews, Inc., owns and operates more than 50 health media websites primarily focused on rare diseases and chronic conditions. Nearly 76% of its workforce are affected by a rare or chronic disease. BioNews aims to provide patients and caregivers with access to accurate and relevant information, first-hand perspectives and insights, and ways to connect with their community through its news articles, columns, forums, and other resources.