ALS panel series shares information, insight, and hope

When my late husband, Jeff, was diagnosed with ALS in the fall of 2018, I’d heard of the disease only peripherally. Like many, I’d completed the Ice Bucket Challenge in 2014 without an inkling that someday this disease would affect someone I loved. Swept up in the momentum of people pouring ice over their heads and posting the videos to social media, I participated in the challenge to support what seemed to be a worthy cause.

It wasn’t until Jeff’s diagnosis that I learned what ALS actually is: a progressively degenerative neuromuscular disease that slowly robs people of their ability to walk, speak, eat, and eventually breathe. It’s a brutal, fatal disease with very few treatments and no known cure. I was woefully unprepared for what lay ahead and lacked a clear path to finding information.

I quickly learned two things, though: First, that many people don’t know what ALS is, much less understand it; and second, we are not alone in this feeling. ALS is not all that rare, but it is largely unknown to those newly diagnosed and to others in the community.

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My friend Tim Lowrey observed the same. Diagnosed with ALS in 2018, Tim is a creative, articulate, and quick-witted leader who, at the time of his diagnosis, was enjoying a fulfilling career as a pharmacist for Wegmans in Buffalo, New York. Alongside his wife and caregiver, Emily — an artist and a force in her own right, and a graduate student in public health — Tim has spent thousands of hours working on ALS advocacy.

Among his early advocacy ideas was hosting a virtual panel to educate his friends and colleagues at Wegmans about the disease. This was done under the auspices of I AM ALS, an organization for which both Tim and I, and dozens of others, volunteer.

I had the good fortune of being among the panelists Tim assembled that first day in 2021 when we talked with his teammates about the disease. We were candid about what it’s like to live with ALS as a patient or caregiver. We discussed symptoms and treatments, hopes and concerns, practicalities and unexpected challenges. The conversation was moving and dynamic. Though it sounds cliché to say, it was true: There was laughter and there were tears. I think all of us, panelists and audience alike, came away believing that we’d helped one another better understand, in simple words and with no jargon or fear, some of the mystery surrounding ALS.

Suddenly and swiftly, an idea was born. Tim had hit on a winning formula for educating and sharing information about ALS with those who might not otherwise understand it. He set a goal to provide more. The panel program modestly expanded, first to a university nursing program, then to a physical therapy program. Through word of mouth, panels were requested and assembled, gaining traction as a growing cadre of speakers shared their personal and intimate experiences with students.

As the panels evolved, they became individually tailored to the audience, which now includes medical and health sciences schools, professional and clinical associations, faith-based organizations, libraries, veterans’ organizations, senior and community groups, K-12 schools, and corporate partners. No audience is too large or too small. The panel team has only one rule: No question is off limits. We share diagnosis fears, frustrations about losing the ability to speak, and concerns about death and dying. We discuss treatments, clinical trials, and caregiving.

I AM ALS named the growing program for Tim, a well-deserved honor. In 2021, the program delivered 11 panels to 225 attendees. As of this writing, the Tim Lowrey ALS Panel Series has delivered 61 panels this year alone, reaching 1,543 attendees and counting.

More than 80 volunteers staff the panel as speakers and moderators. Panels are always free, almost always virtual, and always customized to the audience. In the four years since the program began, we’ve educated nearly 6,000 people on how ALS affects the lives of those diagnosed and their loved ones, sharing both practical and personal information.

While we begin each panel with a brief presentation, our audiences seem to value the dialogue, especially when we take questions. Often, we discover that audience members have already been affected by ALS in their families or communities, and in this way, panelists also learn from the audience.

Though Tim has lost his speaking voice, his personal voice has never been more powerful or impactful. His vision and execution, with the help of an I AM ALS task force of volunteers designed to meet the growing demand his idea has created, has educated thousands about the daily realities of life with ALS.

To request a free Tim Lowrey ALS Panel for your organization, or to watch a demonstration video, please visit the program here. A volunteer will respond quickly.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.