How support services are changing

In the wake of the COVID-19 pandemic, our number one priority was to support the safety of the ALS community and our staff, and as a result, we quickly pivoted to moving all ALS Canada office staff to working remotely from home and made changes to our service model to include more virtual and remote support services in place of in-person visits.

Now, with more regions throughout Ontario moving into Phases 2 and 3, many of you have been asking how ALS Canada’s services will evolve. For the foreseeable future, here is what our services will look like:

• Individual support. ALS Canada will be providing virtual and remote support in place of in-person visits. Regional Managers will continue to communicate with people and families living with ALS through videoconferencing, phone, email and/or text. We have received feedback from the community that this model has been working well.
• Support groups. Support groups are now being offered virtually through videoconferencing technology removing geographical barriers, enabling increased participation. These sessions will continue to be offered in this format. For more information about upcoming support groups, please contact your Regional Manager.
• Educational webinars. Webinars featuring a range of expert speakers on a broad range of topics will continue to be developed. Initially, the webinars were created with a focus on the impact of COVID-19 and will now transition to key topics of interest to the ALS community. To access previous sessions, please visit ALS Canada’s archived webinar playlist on YouTube.
• ALS Canada Equipment Program. We will continue to provide mobility and accessibility equipment working in partnership with vendors from across the province with practices informed by recommendations provided by public health experts. We are currently accepting equipment donations prioritizing items of greatest need to our community.

Support services survey results

Given how much has changed in the past few months, in May we emailed a survey to people and families who access our services to collect feedback about the level of support they are receiving during the COVID-19 pandemic. We are pleased to report that:

These have been challenging times and unchartered waters for all of us. Our commitment to innovation and your openness to changes in how we deliver support have resulted in an understanding that the way we support the ALS community and the way in which you need our support had to evolve. Even as COVID-19 restrictions are lifted, we know that the virus is still a risk and that the ALS community is considered a vulnerable population. The health and safety of our community and employees continues to be of utmost importance to us.

With all of this in mind, along with financial shortfalls that will be faced across the charitable sector, we are embracing the opportunity to do things differently going forward. We know that there will still be times when in-person support will be optimal and we hope to reintroduce it for specific circumstances (e.g. someone recently diagnosed with ALS, complex advocacy or support situations that are challenging to discuss virtually, etc.) in the fall, based on consideration of public health officials’ recommendations.

We appreciate your understanding and flexibility as our service model evolves to meet the needs of the ALS community while those needs and the external environment continue to change.

What do you give someone living with ALS to show you care? There’s no ‘one-size-fits-all’ gift that works for everyone, but there are special ways to say “I am thinking of you.” The holiday season can be a perfect time to do just that. We recognize that it’s not always easy to know how to help, so we recently canvassed our regional managers and our online community for their gift ideas. They came back to us with practical suggestions, many of them suitable for someone regardless of where they are in the progression of their disease. Here’s what they had to say.

The gift of time

The gift of time was the number one response from across the board. Gail Renshaw, whose husband, Cliff, passed away from ALS in August, stressed the importance of sharing time together. “The most important thing for Cliff was to spend time with family and friends. Since his diagnosis two years ago, we planned and enjoyed many themed dinner parties to make things fun. ‘Spaghetti Western Night’ was his favourite. Everyone had to come dressed as a cowboy. We watched spaghetti western movies, ate spaghetti, cowboy beans, ribs and corn bread. We made some wonderful memories that we can cherish forever.”

Precious time together can take many forms. It can be a private moment between the two of you or a larger gathering among friends or family. Going out for dinner, or to a sports event or music concert can be a way to maintain connection and enjoy your time together in a different way. When planning a social outing, make sure to consider accessibility if the person you are with uses a cane, a walker, or a wheelchair. A gift of time can also be as simple as reading a newspaper or book aloud if someone you know with ALS is no longer able to turn the pages. Simply offering your company can provide comfort and support to a friend or loved one who is too tired to communicate, but would welcome a caring presence by their side. For the full-time caregiver, offering to spend an hour or so with the person with ALS can also provide some much-needed respite.

The gift of words

Another way to create cherished memories is to help videotape special messages or write letters for loved ones. If someone in your life has ALS and has expressed interest in documenting their feelings, hopes and desires, you could offer to help them by setting up a camera or typing out a message they dictate.

The gift of food

Many respondents also suggested preparing and freezing meals for the family as a way to reduce the load on caregivers. Heather Cockerline, whose dad had ALS, talks about what a relief it was for her parents to have help with cooking meals. “While he was sick, his care was the priority which made meal preparation daunting on some days. What Mom and Dad enjoyed was a steady supply of homemade soups and healthy meals. All they had to do was warm them up.”

The gift of service

The burden of completing daily chores can become overwhelming for a caregiver who is focused on attending to the needs of a loved one with ALS. Relieving some of the stress by offering your services is a wonderful way to help. Some of the most popular suggestions offered by our respondents included snow-shoveling, grass-cutting, babysitting, picking kids up from school, dog-walking, doing laundry, filling out forms, sending emails, and shopping. Housekeeping services were also high on the list, whether it was paid help on a regular basis or an offer from a friend to come and clean the house themselves.

The gift of relaxation

Stephanie Marshall-White suggested offering gift cards for physiotherapy, massage, manicures or pedicures. “My mom recently passed away from ALS and throughout her diagnosis she really liked physiotherapy or massage. I think it would be a great gift to be able to donate an hour of massage or whatever it might be. It really made her feel so much better.”

The gift of entertainment

Carol Skinner, ALS Canada Ambassador and someone who is living with ALS, describes the boredom she experienced as she lost mobility. She also struggles with the physical tiredness that accompanies the progression of the disease. She suggests offering to pay for streaming services such as Netflix, Spotify, or Apple Music to help pass the time. She also suggested smart devices such as smart thermostats, wireless lighting, and wireless speakers and home sound systems that enable a person to control the temperature, lights, and music in the house from their phone without having to get up.

The gift of flowers

Finally, respondents suggested a weekly flower delivery service as a cheerful gift to brighten the house. When you are housebound, a fresh bouquet of flowers every week can be a welcome sight to behold.

The generosity of Canadians has helped three early-career researchers to make ALS the focus of their work in the country’s labs and academic institutions. The research funding, which totals more than $1 million, has been awarded through the ALS Canada Research Program and Brain Canada as a result of money raised through the Ice Bucket Challenge.

Canada is home to many world-class ALS researchers who have played a significant role in landmark discoveries about the disease. Ensuring that our country continues to have a strong community of talented ALS researchers is the goal of the research funding, which supports senior postdoctoral trainees as well as recently hired junior faculty members to secure or maintain a faculty job in Canada. Recipients of this funding are all pursuing forward thinking, high-impact ALS research aimed squarely at helping ALS Canada to achieve its vision of making the disease treatable, not terminal. Furthermore, this research will have a broader impact on our understanding of other neurodegenerative diseases.

2016 marks the second year this particular research program has been funded – it was introduced in 2015 following the Ice Bucket Challenge and provides young investigators with the financial stability to pursue their studies in ALS research at the Assistant Professor level. Without this type of funding, it would be very difficult for ALS research to be a viable area for young Canadian researchers to pursue within our country’s borders.

Partnership with Brain Canada (with the financial support of Health Canada) and funds from the ALS Ice Bucket Challenge bolstered the implementation of this new program and allowed for funding to support the early careers of three promising young ALS researchers from a very strong pool of applicants. By the end of 2016, $20 million in research funding will be awarded through the ALS Canada Research Program as a result of the Ice Bucket Challenge.

Please read on to learn more about the recipients of the 2016 ALS Canada-Brain Canada Career Transition Award.

Dr. Jeehye Park
Assistant Professor, Department of Molecular Genetics
Hospital for Sick Children, Toronto, ON
Title: Characterization of MATR3 mutations associated with ALS
$315,000 over three years

Dr. Park has made significant contributions to neurodegenerative disease research since the beginning of her career. During her PhD work in South Korea with Dr. Jongkyeong Chung, Dr. Park discovered a key connection between two Parkinson’s disease pathways that had a major impact on the field and was published in the elite scientific journal Nature. She subsequently pursued postdoctoral research at Baylor College of Medicine under the guidance of Dr. Huda Zoghbi, where Dr. Park helped to create a network of laboratories with expertise across different animal models to screen for treatments for the neurodegenerative disease spinocerebellar ataxia 1, which led to yet another paper in Nature. Her research then led her to study RNA binding proteins (RBP), where she not only developed a new tool to study them, but became interested in the multiple RBPs that are linked to ALS.

In her lab, Dr. Park will examine how abnormalities in RBPs – in particular, one called Matrin 3 (MATR3) – can lead to ALS. MATR3 was discovered to be a genetic cause of ALS in 2014 and has yet to be studied in any detail. By creating the first-ever cell, fruit fly and mouse models of MATR3, Dr. Park will learn both about the functions of MATR3 and how mutations can confer motor neuron degeneration. Dr. Park will then search for other genes that may increase or reduce mutant MATR3 toxicity in both human cells and fruit fly models to find potential targets for treatment, and follow up with the most promising candidates being tested in the new MATR3 mouse models with an aim to eventually move them forward translationally into the clinic.

As a member of the Canadian ALS research community, Dr. Park will be able to integrate the knowledge gained about MATR3 with the work of others here and around the world as yet another puzzle piece in understanding ALS. By focusing the early stages of her independent career on a less understood ALS mechanism, she intends to find connections between MATR3 and more prominently studied RBPs like TDP-43 and FUS to ultimately unravel key mechanisms in the development of ALS, as well as new targets to treat the disease.

Dr. Veronique Belzil
Postdoctoral Fellow
Mayo Clinic, Jacksonville, Florida
Supervisor: Dr. Leonard Petrucelli
Title: Discovery of transcriptomic biomarkers and epigenetic therapeutic targets for c9ALS and sALS
$110,000 over two years; eligible for an additional $315,000 over three years

Dr. Belzil began her research career as a PhD student at the Université de Montréal under the guidance of world renowned geneticist and Director of the Montreal Neurological Institute and Hospital, Dr. Guy Rouleau. During this time, Dr. Belzil pursued a better understanding of the genetics behind familial/hereditary ALS and led or contributed to more than 20 manuscripts, an amazing accomplishment for a graduate student.

For the past four years, Dr. Belzil has spent her postdoctoral studies pursuing the complex understanding of how alterations in genetic regulation may lead to ALS not just in certain familial forms, but in sporadic ALS that makes up 90-95% of cases. She has led or contributed to a large number of important discoveries.

The high impact work that Dr. Belzil has been pursuing during her postdoctoral training translates very well into an expanded program for an independent laboratory and she aims to continue to tackle these mechanisms as an Assistant Professor. The program she has outlined is also designed to apply the knowledge of these discoveries into a strategy to develop novel and exciting new treatments for ALS that would be based on an intricate understanding of the disease.

Dr. Petrucelli and a mentoring committee at Mayo Clinic are committed to assisting Dr. Belzil to not only reach her goal of becoming an independent investigator at a Canadian institution, but to become an internationally recognized leader in translational ALS research.

Dr. Kessen Patten
Assistant Professor, Genetics and Neurodegenerative Disease
Centre INRS–Institut Armand-Frappier, Laval, QC
Title: Pathogenic mechanisms of C9ORF72 repeat expansion in ALS and development of therapeutics
$315,000 over three years

Dr. Patten started his research career as a PhD student at the University of Alberta under the supervision of Dr. Declan Ali in 2004. There he trained in electrophysiology, cell biology and imaging using zebrafish as a model to study neurodevelopment. After publishing several manuscripts on his discoveries and receiving multiple awards, including national recognition for the outstanding quality of his PhD thesis, Dr. Patten pursued a postdoctoral fellowship in Montreal with Drs. Florina Moldovan and Pierre Drapeau. During that time, among other achievements, he developed zebrafish models of human disease including ALS, and used those models to develop a high-throughput method for drug discovery. This procedure was then used by Dr. Patten in the identification of pimozide as a lead compound in a translational pipeline that has led to a multi-centre Canadian clinical trial to start in 2017. The trial is being supported by the first ALS Canada-Brain Canada Arthur J. Hudson Translational Team Grant that was awarded in 2014.

In the initial years of his independence as an Assistant Professor, Dr. Patten will pursue the development and use of zebrafish models of the most common genetic cause of ALS, C9ORF72, as well as use of the high-throughput screening method to examine more promising compounds for further examination. As a key addition to his work, he has formed strong collaborations with international ALS experts with proficiency in developing motor neurons from induced pluripotent stem cells (iPSCs) that will undoubtedly strengthen the ability to translate zebrafish discoveries to the clinic via the use of human cells.

Dr. Patten has been a regular attendee at the ALS Canada Research Forum for the past several years and has formed relationships with a number of other investigators in the community. Combined with multiple other Canadian investigators using ALS model zebrafish, C. elegans worms, Drosophila fruit flies, mice, rats and iPSC derived motor neurons, Dr. Patten will strengthen this country’s expertise on forming a pipeline of drug discovery that can efficiently reach the clinic and ultimately help make ALS a treatable, not terminal disease.