Living with LEMS isn’t always obvious to the outside world—but that doesn’t make it any less real. Invisible symptoms like muscle weakness, fatigue, or dizziness can quietly disrupt your workday, your weekend plans, or even your sense of identity.

In this episode of The LEMS Aware Podcast, host Amy Grover speaks with Maria, a nurse and home health administrator who was diagnosed with LEMS in 2025. Maria opens up about what it’s like to keep leading at work while dealing with unpredictable symptoms, and how she’s learned to adjust her routines, both professionally and socially, without sacrificing her values or voice.

If you’re learning to live with LEMS or walking alongside someone who is, this episode shares practical ways to deal with what others can’t always see.

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• Presented by Catalyst Pharmaceuticals
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The LEMS Aware Podcast is a new series created to celebrate and support people affected by LEMS, whether they’re patients, caregivers, or medical professionals. Hosted by Amy Grover, Executive Director of Patient Advocacy at Catalyst Pharmaceuticals, the podcast aims to shed light on the everyday realities of this rare neuromuscular condition.

In this trailer episode, Amy introduces the purpose behind the series and what listeners can expect: insightful conversations with individuals navigating LEMS, and expert perspectives from clinicians and researchers in the field.

Whether someone is newly diagnosed, supporting a loved one, or providing care as a healthcare professional, this podcast offers a trusted space for learning and connection.

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Presented by Catalyst Pharmaceuticals
www.catalystpharma.com

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

On this episode of the LEMS Aware podcast, we are joined by Patrick, who shares his challenging journey to receiving a LEMS diagnosis. As someone dedicated to serving others through work and church, Patrick struggled with suddenly needing to rely on others for help. His diagnosis process forced him to take significant time off, burning through his sick leave. Like many of our guests, Patrick's experience taught him the importance of being in tune with his body, recognizing when something feels "off," and persistently advocating for himself to seek answers about his health.

LEMSaware.com was created to deliver relevant information, resources, and connections to patients and caregivers who may be dealing with LEMS. Wherever you are on your journey-searching for the right doctor, the right diagnosis, or the right treatment-this site can guide you to that next milestone.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

On this episode of the LEMS Aware podcast, we are joined by Karyn. Karyn first started feeling her symptoms of LEMS 24 years ago, but wasn’t diagnosed until 2013. Living with her disease for almost 12 years before receiving her diagnosis helped her adapt to life in new ways, become more comfortable in her condition and gave her time to accept that a new normal is okay. Karyn’s frequent moves throughout her life, as well as her career as a social worker, enabled her to see her abilities and how they have changed as part of her life but not what defined her life.

LEMSaware.com was created to deliver relevant information, resources, and connections to patients and caregivers who may be dealing with LEMS. Wherever you are on your journey-searching for the right doctor, the right diagnosis, or the right treatment-this site can guide you to that next milestone.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

In this episode of the LEMSaware podcast, we talk with Greg from his Northern Idaho home and the picturesque view filled with opportunities to enjoy some of his favorite hobbies.

Greg takes us through life before and after his LEMS diagnosis, including several exciting career changes. Greg's diagnosis journey of self-advocacy and testing was fueled by his positive attitude and ability to keep pushing himself to enjoy what he loved most, even in small doses. Listen along as he discusses what adjustments he needs to make to continue the lifestyle he has always loved since his diagnosis.

LEMSaware.com was created to deliver relevant information, resources, and connections to patients and caregivers dealing with LEMS. Wherever you are on your journey- searching for the right doctor, diagnosis, or treatment- this site can guide you to that next milestone.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

On this episode of the LEMSaware Podcast, we are joined by Jena, a caregiver to her mother, who was diagnosed with LEMS. Jena's mother now lives with her, and Jena discusses the challenges of being a caregiver to her mother and young daughter. The most challenging part of watching her mother age is when she is having a LEMS-y day. Jena deeply understands the importance of empathy and patience when caring for her mother and approaches everything in the same way that she hopes her daughter can do for her one day. Jena discusses the importance of communication and that the goal for her mother is independence for as long as possible.

LEMSaware.com was created to deliver relevant information, resources, and connections to patients and caregivers dealing with LEMS. Wherever you are on your journey-searching for the right doctor, the proper diagnosis or the right treatment-this site can guide you to that next milestone.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

In 2023, NORD (National Organization for Rare Disorders) will be celebrating its 40th Anniversary and the 40th Anniversary of the Orphan Drug Act. On February 28th, NORD will lead the charge on Rare Disease Day. A day in which anyone can get involved to raise awareness for rare diseases.

In this episode, we talk with Jill Pollander, the Vice President of Patient Services at NORD. Jill talks about the history of NORD and the Orphan Drug Act and how NORD supports the rare disease community. Jill gives us insight into rare disease patient organizations and how they can support rare disease patients. Jill also speaks to ways you can get involved and raise awareness for rare diseases and what resources are available. And most importantly, how you can participate in Rare Disease Day on February 28th and join the millions of rare disease patients who are raising their voices and elevating awareness for rare disease support.

LEMSaware.com was created to deliver relevant information, resources, and connections to patients and caregivers dealing with LEMS. Wherever you are, searching for the right doctor, diagnosis, or treatment, this site can guide you to that next milestone.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

“I was built for comfort, not for speed.” Invisible diseases can be just as hard to acknowledge and understand for the person experiencing as they are for those around them.

In this episode we talk with Romy about her big ideas for how to share the realities, and awareness of, Rare Diseases with the general population. Her goal is to reach the masses and she is using her experience and her passion in driving that mission. Romy also opens up about her own lack of awareness and understanding the disease that was shaping her life and what resources were available to her had she been given more information by her doctors in the beginning.

LEMSaware.com was created to deliver relevant information, resources, and connections to patients and caregivers who may be dealing with LEMS. Wherever you are on your journey—searching for the right doctor, the right diagnosis, or the right treatment—this site can guide you to that next milestone.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.