Impact and Innovation – What Does It Mean for People Living with ALS?

The ALS Society of New Brunswick and Nova Scotia is opening an Impact and Innovation Centre at our “new-to-us” office in Burnside. This space will allow us to collaborate with people living with ALS and PLS (Primary Lateral Sclerosis, a phenotype of ALS), caregivers, researchers, and healthcare professionals who want to change lives for the better.

That all sounds ambitious—but what does it really mean?

Impact occurs when an outcome changes. So the question becomes: what needs to change for families living with ALS? We have some ideas, but we are also relying on the ALS community to confirm those ideas and share their own.

Here is what we believe needs to change.

Supporting Caregivers

Professional and family caregivers need ALS-specific training. At the ALS Society, we hear from caregivers every day who are scared and unsure if what they are doing is right. Many feel isolated and alone.

Caregivers need rest. But rest is hard to achieve when no one is available to manage a feeding tube or a breathing machine. There must be ALS-specific training for all types of caregivers and respite workers.

We’re working on that.

Reducing the Financial Burden

ALS is an expensive disease. The ALS Society of New Brunswick and Nova Scotia helps by loaning, free of charge, costly mobility, communication, breathing, and other assistive equipment. Even so, families continue to face significant financial strain.

Until this year, people living with PLS had little to no support from any agency. The ALS Society is expanding its programs and services to include this patient group. We are also assisting first-time users with the cost of feeding-tube formula and breathing-machine supplies.

Improving Access to Expertise

For people living with ALS or PLS in rural areas, accessing clinicians with experience in the disease can be very difficult. ALS is rare, and many community-based clinicians—occupational and physical therapists, dietitians, speech-language pathologists—may never have had an ALS or PLS patient.

With the help and guidance of experienced clinicians, the ALS Society is working to address this gap.

We’re working on that.

Expanding Access to Clinical Trials

There are significant barriers to accessing ALS clinical trials in the Maritimes, particularly in Nova Scotia.

We’re working on that too.

There are many other outcomes we will collaborate on through our new ALS Impact and Innovation model and space. Stay tuned for more news.

What Do We Mean by Innovation?

When people think of innovation, they often imagine futuristic technology and grand ideas. At its core, innovation is simpler—and more powerful. It is about seeing existing problems in a new way, challenging old assumptions, reframing the question, and applying creative thinking to find better solutions.

The ALS Society of New Brunswick and Nova Scotia is committed to collaboration—bringing ideas together to develop new solutions to the real problems affecting people living with ALS and PLS.

The ALS Impact and Innovation Centre will serve as both a model and a physical space to bring people together.

How Can You Help?

If you have been impacted by ALS—as someone living with the disease, a caregiver, researcher, or clinician—we would love to connect with you. We want to hear your ideas for a better future and explore how you might contribute as we move forward.

• Would you like to help design and deliver professional development for clinicians?

• Are you interested in advocating for better access to clinical trials in the Maritimes?

• Do you have expertise in caregiver training?

• Are you connected to individuals or organizations who could help us implement our plans?

• Would you consider becoming a volunteer board member?

One of the most powerful ways to help is to share your story publicly—the impact of the disease, the barriers you face, how you’ve navigated life with ALS, and how the ALS Society may have supported you. When stories are shared, people outside the ALS community are moved to act.

And, of course, if you are able, continued financial support is essential—not only to sustain our current programs and services, but to grow and innovate for the future.

We would love to hear from you.

📧 kcarter@alsnbns.ca

🌐 www.alsnbns.ca – information, resources, and donations

📞 902-454-3636