“In the ALS community, we have a hashtag #WhileIStillCan, which is such an important statement for people living with this disease. We know what lies ahead. I used to be a very active person. It may look like I've not slowed down but there are many things that I can no longer do – tied to my career, my personal life and things I loved doing. I believe that with the time I have, there's a responsibility as a patient and for researchers to do what we can. ”
- Kris Noakes: Mother, Community Leader, ALS advocate
Aanii. My name is Kris Noakes, My name is Kris Noakes, I am Anishinaabe, citizen of the Anishinabek Nation, member of Nipissing First Nation. As someone living with Amyotrophic Lateral Sclerosis (ALS), I have decided to donate my patient data and biological samples to The Neuro’s C-BIG – the world’s first Open Science combined biobank and patient registry devoted to neurological diseases - to help advance research and treatment for ALS and other diseases.
Donating my biological samples and patient data to the C-BIG biobank
Donating to C-BIG – giving samples of fluids, even spinal taps – has been easy to do. You’re dealing with professionals who know what they're doing, and they make you as comfortable as possible. I walked out of there with a smile on my face, because I felt that I was really helping. The patient is the most important part in the research process, in improving care, because they know exactly what's going on with their own bodies. When researchers reach out to the community like this, we become part of the solution, part of progress.
With all the information and cutting-edge resources that C-BIG is making available to researchers across Canada and around the world, I think there are high chances of C-BIG and its collaborators making really good progress in finding therapies, even a cure. It’s inspiring to be a part of something where globally people are collaborating in this manner. There is real momentum and it's wonderful to be part of something new, big, and hopeful for the ALS community, and for patients with other rare or neurological disorders.
The Clinical Biospecimen Imaging and Genetic (C-BIG) Repository is the world’s largest biobank of neurological disorders and an Open Science resource for the global scientific community. Driven by patient partnerships, C-BIG welcomes participation from both patients and healthy controls. Get involved.
Listening to patients builds trust
Patient engagement is critical to our success. But before you can have patient engagement, you need a patients’ trust. As a First Nations person there is a history of mistrust with science and the healthcare system. We have been excluded not only as patients but also in the representation with our experts and our healthcare professionals. Our opinions and perspectives are often dismissed or devalued, whether intentionally or unintentionally.
Relationships are the key to building that trust. I questioned what I was told originally at my local clinic because what I was hearing in the ALS community and elsewhere was the complete opposite. I did my own investigating to educate myself as much as I could about ALS. Especially as it’s only within the last decade they've really started to learn about the type of ALS my family suffers from. We are on the rare side of the rare disease. 90% of people with ALS have the sporadic form which behaves a lot differently from what we have.
My journey to educate myself led me to The Neuro. When you walk into The Neuro and meet the people who work with C-BIG, they inspire you to engage and be a part of initiatives. That's an important piece of the patient journey – I finally found a place where people are truly listening to my experience and perspective. We've developed relationships of trust, and openness, which is one of the most wonderful things I've experienced within our healthcare system.
Why I am openly sharing my patient journey and experiences
I realized that not everybody has the same access to information and resources. That’s what inspired me to start advocating for other patients, and to participate in patient-centered research. If we as patients or people affected by ALS and other diseases share our stories and advocate within our communities, more people will feel comfortable to seek out other perspectives and opportunities.
We want to make sure we're not leaving anybody behind. That everyone’s perspectives and needs are included, and that they are aware that the opportunity to participate in research is available to them. Whether it's genetic testing or donating samples to C-BIG, for example.
In the First Nations teachings of the Seven Generations, we talk about what we are doing for the people ahead, how the decisions we make today not only affect us but also future generations. That certainly is a teaching that reflects my family and the generations that we've lost previously to ALS. I think most people, if they had the information, would want to contribute to C-BIG, because future generations will benefit from it. We are going to save lives, and we can only ever do it together.
Something bigger than us as individuals
I think we inspire each other to keep moving. The spirit of people we've lost lives on through those living with ALS today, through the people who volunteer and support us, and through the work that's being done at C-BIG. When you donate your samples, it will continue to help people for generations beyond us.
C-BIG data are available globally. So maybe now with C-BIG there's a part of me that will finally take a trip to Japan. I've always wanted to travel the world, so you know, there are many ways to look at this.
