ALS community stories

Letters to ALS: A New Book Captures Voices of Canada’s ALS Community

What would you say if you could address ALS directly? Would you express frustration at its relentless progression, grief for what has been lost, or resolve in the face of uncertainty? Or might you reflect on the clinical advances, the multidisciplinary collaboration, and the moments of humanity that define care in this complex disease?

These questions form the foundation of Letters to ALS: Our Journeys to Hope, a new book that brings together deeply personal reflections from across the Canadian ALS community.

The book features letters from people living with ALS and family members of those living with ALS. The letters offer a window into the life-altering impacts of the disease, while paying tribute to the extraordinary strength, resilience, and hope that unites the ALS community.

The book also includes entries from healthcare professionals such as neurologists, researchers, nurses, and multidisciplinary care specialists who play an integral role in the ALS community. Their letters share what personally drives their passion and empathy and highlight the strides towards understanding ALS.

“Hearing firsthand accounts and meeting the incredible people behind these stories has given me a deeper connection to the community and a revitalized appreciation for their strength," shares Sophy Olafson, Neurology Account Specialist at Shionogi Canada Inc. "From the very first concept, our goal was to create a platform where the Canadian ALS community could speak directly, authentically, and without filter. This book is a powerful testament to their resilience, designed to empower, validate, inform, and unite those affected by ALS."

Shionogi Canada Inc. would like to thank the following individuals and groups who contributed to Letters to ALS: Our Journeys to Hope:

• Kerry Adams, Speech Language Pathologist
• Dr. Richard Bedlack, Neurologist, ALS specialist and researcher
• Dr. Andy Eisen, Neurologist, ALS Specialist, researcher and advocate
• Donna Gallant, retired teacher, person living with ALS
• Dr. Angela Genge, Neurologist, ALS specialist and researcher
• Kris Jagt, ALS nurse
• Melinda Kavanaugh, PhD., Professor of Social Work
• Shameem Kizar, Registered Dietitian
• Linda Leonard, retired musician and teacher, person living with ALS
• Heather Lucier, mother of Jess, who lived with ALS
• Norman MacIsaac, author, person living with ALS
• Krista MacMillan, Occupational Therapist
• Lana Kim McGeary, spiritual care counsellor
• Jess Menard, Pediatric Psychologist, person living with ALS
• Barb Miller, ALS nurse
• Dr. Colleen O'Connell, Physical Medicine and Rehabilitation Physician, ALS specialist and researcher
• Cameron Starritt, husband of Judy, who lived with ALS
• Paula Ciampini and Luke Stock, former spouse and son of Dean Stock, who lived with ALS
• Grace and Sophie Stock, daughters of Dean Stock, who lived with ALS
• Dr. Michael Strong, Neurologist, ALS specialist and researcher
• Dr. Anu Tandon, Respirology specialist
• Paula Trefiak and Benjamin Webb, mother and son with familial ALS
• Dr. Sammy Winemaker, Palliative Care Physician
• Dr. Lorne Zinman, Neurologist, ALS specialist and researcher

Letters to ALS: Our Journeys to Hope is available online, free of cost to Canadians. Access the digital version of the book here: bit.ly/4rUPGsW

This project was sponsored by Shionogi Canada Inc. as part of its commitment to the ALS community and developed in collaboration and with the support of ALS patient organizations across Canada, showcasing how connected the community is nationwide.