Amyotrophic lateral sclerosis (ALS) is a complex disease with varying symptoms and severity for people affected. Due to its heterogeneity, diagnosing the disease can be challenging and finding effective treatments can also be difficult.
Through a collective effort, researchers aim to better understand the genetic causes of ALS, identify biomarkers for early detection, and impact how clinicians can treat the disease.
Participating for future generations
Looking back, Kris Noakes can see how her genetic form of ALS has impacted her family through generations. Living with the disease has meant letting go of parts of her life, including her love for running and reimagining her career.
After Kris recovered from the initial shock of her diagnosis, she turned to her First Nations teachings for guidance. Embracing her feeling of responsibility for the community, she is determined to assist in research, advocacy, and support for people like herself living with ALS.
Kris journeys to Sunnybrook Hospital in Toronto four times a year, where the team looks at the progression of the disease, and she undergoes MRI scans, cognitive and speech testing, and has her blood collected.
“People aren’t necessarily thinking of this at the time of diagnosis,” Kris shares. “It’s half a day that can really have an impact on our lives. It’s a small sacrifice to help lead us to finding a cure for this devastating disease.”
Samples and data are de-identified and will be shared globally for researchers to use for scientific advancement. Kris believes the more her samples are used, the better. She likes the idea of her samples travelling around the world and going to the places she might not have the opportunity to see in her lifetime.
“People can study me any way they want. My life depends on it; how can I not participate? My children’s lives, my cousins. The clock is ticking,” she adds.
Importance of personal engagement
CAPTURE ALS prioritizes the voices of people affected by ALS, their families, friends, and communities. It has an active Participant Partner Advisory Council (PPAC) that advises on research priorities, participant recruitment, and engagement guidelines.
“By including the voices of people living with ALS, the research gains an elevated sense of purpose and urgency,” said Shelagh Genuis, a CAPTURE ALS member who works with the PPAC. “Research projects sometimes fall behind schedule, but for someone living with ALS, every day counts. With their presence on our council, researchers are reminded of the time-sensitive nature of their work and are motivated to prioritize the needs of people affected by the disease.”
Participant engagement has been a priority since the beginning of the initiative. Early consultation with focus groups of people living with ALS and family members informed and shaped the funding application, including study design and CAPTURE ALS’ data sharing plan. Today, their participation ensures that the lived experience is embedded in all the research the team engages in.
Healthy Canadians are also needed in research
The ALS Society of Canada (ALS Canada) is proud to support CAPTURE ALS, and our team is actively participating in it. Carolina Jung, research specialist at ALS Canada, recently participated in the study as a healthy control participant.
“Healthy controls are an important part of any research study,” Carolina shared. “For researchers to obtain reliable and impactful results, they need healthy volunteers to participate. It’s a small contribution of your time and effort that can ultimately have a huge impact on people living with ALS.”
Join CAPTURE ALS
The team at CAPTURE ALS is seeking people living with ALS, their families, and control participants who can travel to clinics located near Edmonton, Toronto, Montreal, or Quebec City. To learn more about getting involved, visit captureals.ca.
In late 2018, Facebook began offering the option for Canadians to create fundraisers for nonprofit organizations or for personal causes. Since then many of you have reached out to us with questions about how these giving options can be used to support ALS Canada. We know Facebook can be a quick and easy way to raise money and engage your friends and family, and are grateful to all who have chosen to support us in this way.
There are some important things to be aware of when creating or donating to Facebook fundraisers, so here’s a primer on the options available and how they work – along with using our ALS fundraising website.
1. Facebook: Raising money for a nonprofit organization
Visit facebook.com/fundraisers. You can create a fundraiser for ALS Canada by searching for “ALS Society of Canada” from the list of registered charities. Donations are processed at no cost to the donor or to the individual who set up the fundraiser. For your donation, you will receive two separate emails: a transaction receipt for the payment and your official donation receipt. These are sent by Facebook on behalf of their fundraising partner, the PayPal Giving Fund, which delivers the funds to ALS Canada.
Some things to be aware of when creating or donating to Facebook fundraisers to support ALS Canada:
If you or your donors have any questions about setup, donations, donation receipts or refunds, you must contact theFacebook Fundraiser Support Centre.
When you donate through Facebook, we do not receive your contact details and therefore are not able to communicate with you.
As per Canada Revenue Agency regulations, we are not allowed to issue tax receipts for donations that are made to a third-party charity—in this case, the PayPal Giving Fund.
2. Facebook: Raising money for a personal cause
Personal causes generally refer to fundraisers in response to individual needs – for example a family that requires financial support after losing their home to a fire, or an education fund for a child whose parents have suddenly passed away.
If you create or give to a personal fundraiser on Facebook, a portion of the donation is used to cover processing fees. Funds are deposited to the bank account specified by the person who set up the fundraiser. The person who set up the fundraiser is responsible for making sure the donations are sent to ALS Canada.
Some things to be aware of when creating or donating to personal causes on Facebook:
Tax receipts are not issued when a person donates to a personal fundraiser because the donation doesn’t go directly to a charity but instead goes to the bank account specified by the person who set up the fundraiser.
Only a charity with a registered charitable number from the Canada Revenue Agency can issue tax receipts.
Example of a successful ALS fundraiser
Adam Foley used My ALS Fundraiser to meet (and surpass) his $12,000 fundraising goal for his 900km bike ride in memory of his brother, Matthew.
3. ALS Canada’s “My ALS Fundraiser” platform
Visit My ALS Fundraiser at www.als.ca/myalsfundraiser to create your own fundraising event or find an existing event to give to. When you fundraise through our platform, ALS Canada will receive the contact information for each donor and automatically issue them a tax receipt by email when they donate online. This helps us stay in touch and provide support for your tax receipting requirements. We also have lots of resources available here, including an event organizer toolkit, templates for things like posters or social media, and best of all, your very own ALS Canada event coach to support you every step of the way.
Interested in fundraising with us? Contact our team at teamals@als.ca or head over to the My ALS Fundraiser website to get started.
Thank you to all our donors for their generosity and continued support—in any way you choose to give.
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