Live webinar Nov. 6 puts focus on FA patient-caregiver relationship

A live, virtual roundtable on Nov. 6 at 6 p.m. EST will explore how people with Friedreich’s ataxia (FA) and caregivers can work together to deal with the everyday challenges of FA while living full lives.

The free webinar, “Stronger Together: Patient and Caregiver Collaboration in FA,” is presented by Friedreich’s Ataxia News and its publisher, Bionews, with support from Biogen. Registration is open for those interested in attending.

“We’re very excited about the upcoming FA live event and the caregiver and patient panelists participating,” said Kevin Schaefer, Bionews’ associate director of community content. “The topics will include communication between patients and caregivers, navigating the healthcare system, and so much more. We think it will be a very fruitful discussion and a great opportunity for the community as a whole, both for awareness and as an educational resource.”

The moderated panel discussion is for caregivers, healthcare professionals, and any of the estimated 1 in 40,000 people around the world who live with the disease, which primarily affects the nerves and muscles. The discussion will cover a range of issues about living with FA. Questions can be submitted as part of the registration process.

“In our four years of serving the Friedreich’s ataxia community, we’ve grown to adore its members,” said Brad Dell, Bionews’ director of community content. “We admire their eagerness to speak vulnerably and with great encouragement, so providing another avenue for our site really does give us joy.”

‘Where the magic happens’

The progressive neurological condition affects muscle strength, balance, and coordination, which can make day-to-day life difficult. Effectively managing FA may involve juggling healthcare visits, occupational and physical therapy appointments, and mental health support. It may also require learning how to use assistive devices and adaptive measures to remain independent for as long as possible.

Click the image above to register for the free event on Nov. 6.

The event will be hosted by Sean Baumstark, who was diagnosed with FA when he was 25 and co-hosts the motivational podcast, “Two Disabled Dudes.” Two FA patients and two caregivers will serve as panelists.

One of the patient panelists is Kiersten Riggs, who was diagnosed in 2018. The former high school cheerleader is now a social media manager and content creator who seeks to shatter stigmas associated with disabilities by sharing stories about travel, establishing a career, and finding love.

The other patient panelist is Kyle Bryant, a program director at Friedreich’s Ataxia Research Alliance (FARA) who was diagnosed in 1998 at age 17. He helps run FARA’s ambassador program and co-hosts “Two Disabled Dudes” along with Baumstark. Bryant, a long-time FA advocate, also leads rideAtaxia, a national FA research fundraiser that has raised more than $11 million since its founding in 2007.

“Helping people understand that they’re not alone, that for me is one of my purposes in life,” Bryant said.

The caregiver panelists are Victoria Carbone, whose husband, Nick Carbone, is a lawyer who has had FA for 27 years, and Norman Simpson, a research scientist whose adult child, Donovan, has the disease.

“Events like this are where the magic happens,” Bryant said. “People can see each other face to face and understand that, ‘Oh look, there’s someone who is happy and successful and all these things,’ and think, ‘Maybe I can be that, too.’”

The webinar will be available for on-demand viewing on the Friedreich’s Ataxia News site within two weeks after the event.