A Gathering of Knowledge, Collaboration, and Hope

Joumana Fawaz-Baroody, RN, BSN,
Vice President of Care Services, ALS United Greater Chicago

Reflecting on the December 2024 Allied Professionals Forum and MND Symposium in Montreal

Last December, I had the privilege of attending the 2024 Allied Professionals Forum (APF) and International Symposium on ALS/MND in Montreal. This vibrant, international gathering brought together professionals from over 40 countries—each committed to improving the lives of people living with ALS and MND. It was both professionally enriching and personally inspiring.

What Makes This Forum Unique

Held alongside the MND Symposium, the Allied Professionals Forum centers on real-world care practices delivered by healthcare professionals who work directly with individuals affected by ALS. Presenters included physiotherapists, occupational therapists, speech-language pathologists, nurses, dietitians, neurologists, psychologists, and others—all sharing innovative, research-backed strategies for addressing complex care challenges.

A key theme throughout the forum was the power of interdisciplinary collaboration. From customized eye-gaze communication systems to hands-on nutrition workshops and thoughtful approaches to spasticity management, every session emphasized the importance of team-based, personalized care that supports functional independence and quality of life.

In an era where the ALS community is calling for faster, more patient-centered progress, the forum showcased promising developments—from integrated care systems and virtual service delivery to tools that measure patient experience. It was a hopeful reminder that innovation in ALS care is not just possible— it’s already underway.

Presentation Highlights

• Palliative Care as a Foundation, Not an End Point: One session powerfully emphasized integrating palliative care from the point of diagnosis—not only for symptom relief but also for communication, values clarification, and emotional support for both patients and caregivers.
• Creative Approaches to Nutrition: An interactive presentation from the Edmonton ALS Clinic reimagined food modification with humor and creativity, showing how even foods like pizza and hamburgers can be pureed—while preserving dignity and flavor.
• Success with Eye Tracking Technology: Bridging Voice reported a 93% success rate using Augmentative and Alternative Communication (AAC) devices with people with ALS, demonstrating the power of pairing eye-gaze technology with proper training, education, and ongoing support.
• Spasticity Management with Botulinum Toxin: A team from Ireland showcased how allied health professionals play a role in evaluating and administering Botox to treat focal spasticity, resulting in improved comfort and function.
• Communities of Practice: Initiatives in Quebec and the UK highlighted how online networks for healthcare providers support ongoing learning, case consultations, and professional connection—bridging geographic divides

Why These Meetings Matter

The APF and Symposium are more than professional conferences—they are vital forums for:

• Exchanging knowledge
• Building global networks
• Centering patient voices
• Renewing our shared commitment to person-centered, compassionate care

They remind us that innovation doesn’t always require high-tech solutions. Sometimes, it begins with listening deeply, asking what matters most, and working together across disciplines.

Building Unified Systems of ALS Care and Research

In both the U.S. and Europe, momentum is growing to connect specialized ALS care with research, reduce disparities in access, and foster collaboration among clinicians, policymakers, and patients.

• The European ALS Coalition is advocating for ALS to be included in EU-wide health strategies, driving policy change and reducing care inequalities across member states.
• In the U.S., a proposed National Integrated ALS Care & Research Network would use a hub-and-spoke model to link community-based care with tertiary research centers—improving diagnosis timelines, expanding access, and enhancing research participation.

Real-World Recovery with Qalsody (Tofersen)

One of the most groundbreaking developments shared at the Symposium was real-world data supporting the efficacy of Qalsody (tofersen)—a genetically targeted therapy for SOD1-ALS.

A study from Washington University in St. Louis followed seven patients from 2021–2024
and found:

• Stabilization or improvement in ALSFRS-R scores
• Significant reduction in neurofilament light (NfL), a biomarker of disease progression
• Measurable gains in muscle strength and independence

Supporting studies from Italy and Germany reinforce the potential of antisense therapies not only in SOD1-ALS but possibly across the ALS spectrum.

Approved in 2023 as the first genetically targeted ALS therapy in the U.S., Qalsody is a product of over two decades of ALS community-funded research and advocacy.

Final Takeaway: A Shared Commitment to Progress

From palliative care and policy reform to home-based services and breakthrough therapies, one message rang clear across every session: the ALS community is ready for change—and united in purpose.

As new therapies like Qalsody redefine what’s possible, efforts to build integrated, patient-focused systems are ensuring that these breakthroughs reach everyone who needs them. The future of ALS care is no longer just about slowing decline—it’s about recovery, connection, and hope.

The central message woven throughout the conference was this: People living with ALS deserve access to the best we have to offer—clinically, emotionally, and socially—and it is our job to keep learning, collaborating, and advocating until that is a reality for all.

To be part of a global community united in this mission was both humbling and invigorating. These meetings equip us with fresh tools, valuable insights, and renewed energy to carry our work forward—along with deep gratitude for every presenter, organizer, and caregiver who makes this movement possible.