LEMS Aware Community Podcast to Launch on Rare Disease Day, Feb. 28

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by Marisa Wexler, MS |

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A new podcast, called LEMS Aware, is launching this month on international Rare Disease Day with the goal of connecting members of the Lambert-Eaton myasthenic syndrome (LEMS) community and increasing awareness about the disease.

The podcast will focus on topics unique to LEMS, but also of interest to the wider rare disease community. It will feature LEMS patients and physicians, as well as rare disease influencers.

Rare Disease Day, an international event set aside to raise awareness about rare health conditions, improve access to care, and spur new treatments, falls this year on Feb. 28.

The first episode will feature rare disease advocates Ashley Gregory and Price Wooldridge. The podcast will be available on the LEMS Aware website, and also on Apple Podcasts, Spotify, Google Podcasts, and Amazon Music.

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“It is critical that rare disease patients do their own thorough research and be self-informed, a process that benefits from rare disease-focused awareness campaigns,” Gregory said in a press release.

“Becoming a patient advocate has been a big part of my LEMS journey, and I am quite passionate about it. The process of helping others in the community is exceedingly fulfilling to me,” Gregory added.

In the inaugural episode, the pair will discuss their difficulties getting a diagnosis for their disorder and their strategies for overcoming the everyday issues of living with LEMS.

“Understanding the challenges of living with a rare disease is a key step to overcoming them, a comprehension that comes from rare disease education. Many times, people do not understand your daily struggles unless they are living with you,” Wooldridge said.

“I want to educate the community about LEMS and be a guide for those who are beginning their LEMS journey. Awareness and education are the most critical ways we can inform others about rare diseases and their challenges,” Wooldridge added.

The new podcast is sponsored by Catalyst Pharmaceuticals, which markets the approved LEMS treatment, Firdapse (amifampridine).

“We are steadfast in our goal of educating the community and arming them with tools that will facilitate the perception of their diagnosis,” said Patrick J. McEnany, Catalyst’s chairman and CEO. “This podcast, engaging rare disease warriors, patient advocates, and physicians, will help our patient population relate and get answers to their many questions.”