Living with spinal muscular atrophy (SMA) presents unique challenges that extend far beyond medical care. On August 25, a free webinar will delve into the aspects of life with SMA that are often overlooked in clinical settings, such as romantic relationships, careers, and travel.
The event, titled “Rarely Speaking: SMA Beyond the Clinic (Real patient voices. Real lived experience. Zero clinical lecture.)”, will be hosted by SMA News Today and moderated by Kevin Schaefer, community editorial manager at Bionews. Schaefer, who lives with SMA type 2 will guide a panel of patient advocates through a discussion on navigating life with SMA.
Panelists Share Personal Journeys
The panel features a diverse group of individuals who bring a wealth of experience and insight to the table. Joining Schaefer are 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. The panel will also include Albert Freedman, PhD, a psychologist and rare disease consultant with extensive experience supporting families affected by SMA.
Navigating Life with SMA
The webinar will be structured into three main segments, each focusing on a different aspect of life with SMA. The first segment will explore the complexities of navigating romance and intimacy. The panelists will share their personal experiences and offer practical advice on building and maintaining meaningful relationships.
Following this, the discussion will shift to careers and employment. The panelists will discuss the challenges and opportunities they have encountered in the workplace, providing valuable insights for those looking to pursue their professional goals while living with SMA.
The final segment will focus on travel, highlighting the adventures and experiences that are possible with careful planning and the right support. The panelists will share their travel stories and offer tips for making journeys smoother and more enjoyable.
The Importance of Patient Voices
Schaefer emphasizes the significance of this panel discussion, stating, “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.”
The webinar is designed to be an interactive experience, with a Q&A session following the panel discussion. Attendees will have the chance to ask questions and engage with the panelists, fostering a sense of community and shared understanding.
Whether you are living with SMA, a healthcare professional, or a caregiver, this webinar offers a unique opportunity to gain insights and learn from the experiences of others. Don’t miss this chance to be part of the conversation and to connect with the SMA community.
