SMA webinar to explore relationships, careers, and travel beyond the clinic
Patient advocates will share lived experiences and practical perspectives Aug. 25
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- SMA is a neuromuscular condition that causes muscle weakness and can affect mobility and daily activities.
- The upcoming webinar will explore relationships, careers and travel as part of everyday life with SMA.
- Patient advocates will share lived experiences and perspectives on navigating life with SMA beyond medical care.
In a few weeks, SMA News Today will host a free webinar exploring aspects of life with spinal muscular atrophy (SMA) that are rarely discussed in the doctor’s office, including romantic relationships, careers, and travel.
The webinar, taking place Aug. 25 at 1 p.m. ET, is titled “Rarely Speaking: SMA Beyond the Clinic (Real patient voices. Real lived experience. Zero clinical lecture.).” The event will be moderated by Kevin Schaefer, community editorial manager at Bionews, the parent company of SMA News Today.
Patient voices take center stage in SMA discussion
“This panel discussion will give people a chance to hear directly from members of the SMA community about topics like mental health, relationships, and employment,” said Schaefer, who lives with SMA type 2 and writes the column Embracing My Inner Alien on this site. “As an adult with SMA, these types of conversations are incredibly important for our community. Too often, we aren’t given a platform to share our stories and make our voices heard. This is an opportunity for us to share our experiences and expertise, and to connect with everyone watching.”
Joining Schaefer are two other patient advocates living with SMA: Mindy Henderson, vice president of disability outreach and empowerment at the Muscular Dystrophy Association and editor-in-chief of MDA’s Quest Media, and Maylan Chavez, a Biogen influencer, Cure SMA chapter lead, and host of the Access Granted podcast. Rounding out the panel is Albert Freedman, PhD, a psychologist, author, and rare disease consultant who specializes in helping families navigate emotional challenges, drawing on 26 years of experience as a caregiver for his late son, Jack, who had SMA.
Together, these panelists will be discussing topics that can play major roles in life with SMA but are not usually the focus of medical care. In the first part of the webinar, the panelists will talk about navigating romance and intimacy while living with SMA. They’ll then discuss careers and employment, followed by travel. The panel discussion is expected to last 35-40 minutes and will be followed by a Q&A, where panelists will respond to questions from attendees.
SMA is a neuromuscular disease that causes muscle weakness. Many people with SMA experience mobility challenges and rely on caregivers or adaptive equipment, such as wheelchairs, for help with mobility and daily activities. During the webinar, the panelists will share their experiences navigating everyday life while living with this disease, with the goal of empowering others with SMA.
“Whether you are someone living with SMA, a healthcare professional, or a caregiver, I hope you will tune in!” Schaefer said.
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