A diagnosis of amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease, is life-changing. The disease progresses quickly, shutting down basic body function, and the average life expectancy of a patient is about five years.
At The Neuro, a specialized team of health professionals brings their skills and experience to help patients manage this diagnosis, delivering the latest in treatments, and conducting research to improve the outcomes for future patients.
In June 2023 The Neuro’s ALS Clinic celebrated its 25th anniversary. Since opening in 1998 it has grown to see 350 to 375 patients, accepting 40 to 50 new patients every year. It has expanded its multidisciplinary team from two people to over 15, including specialists such as a nutritionist, speech language therapist and a spiritual care counselor.
Studies conducted in neurological centres in Europe and the US have shown that this type of specialized multidisciplinary care can extend survival and improve quality of life for patients with motor neurone disease. “I'm very proud of what we've been able to accomplish,” says Dr. Angela Genge, the clinic’s founding director. “We've gone from no real model to having one of the world's leading models in ALS care.”
What makes the team special is their focus on research, according to Dr. Genge. Members of the ALS clinic have received funding from ALS Canada and Brain Canada to implement new programs. The clinic’s spiritual counsellor received a grant to train all clinic staff in Langerian mindfulness practice, a way of reframing situations to navigate uncertainty with more serenity. And occupational therapists received funding to develop tools to simulate on-road driving assessments and introduce adaptations so that patients could continue to drive safely, a key part of maintaining independence and normalcy.
Also, staff have published scientific papers to advance the best practices of their disciplines, and present their projects at international meetings and conferences. “They continue to improve what we do for our patients.”
With few effective treatments for ALS currently available, research is crucial. Clinical trials are used to test new therapies before possible approval by Health Canada or the U.S. Food and Drug Administration. Early access to these therapies can help extend the lives of ALS patients and reduce the impact of their symptoms; they also provide hope.
At The Neuro, the clinical staff work closely with researchers to help patients participate in research, possibly helping not only themselves but people later diagnosed with ALS.
In 2004, Dr. Genge took on the role of executive director of The Neuro’s Clinical Research Unit (CRU), a position she held for 19 years. During that time, the unit grew from a handful of trials for Multiple Sclerosis, to over 125 clinical trials covering 11 different diseases, making it one of the largest neurological clinical research units in Canada.
“On the clinical trial side, the most important trials are brought to The Neuro at its earliest phases for treatment of patients,” says Dr. Genge. The Clinical Research Unit has a special focus on ALS; last year it ran 15 ALS trials at one time. In 2014, it also opened a first-of-its-kind Phase 1 Unit specifically for early stage ALS trials.
The clinic is recognized internationally as a Centre of Excellence in ALS clinical research and care, and as a result The Neuro is often the only site in Canada with a specific trial. Patients may come from across Canada, Europe and the Middle East in the hopes of accessing the potential new treatment being studied.
Having research and clinical care side by side helps to ensure that patients have early access to therapies that are being developed. It is also more convenient for patients, many of whom have trouble moving around, and also means that they are closely followed and have access to clinical staff every step of the way when they participate in a study.
Because of the focus on research and the latest developments in therapies, when asked how he sees the next 25 years of ALS care and research progressing, Dr. Genge is optimistic.
“I think within five years, we are going to have therapies that make certain subsets of ALS chronic as opposed to fatal. So in 25 years, it could be a disease that you live with.”
When asked about her time at the clinic, Dr. Genge says, “I think we have attained something that we could not have imagined -- bringing care to patients at this level from where we were in in 1995, when I started working in ALS. What we've done is amazing. It's been probably the most rewarding aspect of my career.”