Manon Day’s first neurological symptoms happened at 17. In 2011, she became a patient of Dr. Ronald Postuma at The Neuro, who diagnosed her with early onset Parkinson’s disease. Since then, Manon has become a patient advocate and donor to The Neuro’s Open Biobank (C-BIG). The Biobank collects patient samples to be used in neurological disease research by scientists at The Neuro and worldwide.
The Neuro spoke to Manon about her reasons for donating, the process and why she recommends other patients follow her lead.
Why did you decide to donate to research?
I decided to donate for research because I want to play an important role for the advancement of knowledge in the field of Parkinson’s. There are still lots of “unknowns” regarding Parkinson’s. Being a visible minority, I strongly believe it’s even more important donating to a biobank since data and biological materials often lack for these underrepresented ethnic groups.
What was the process like?
I had an appointment with the research manager after my follow up visit with my neurologist. This schedule was very convenient for me. I had to fill in a questionnaire about my Parkinson’s. The research manager informed me about the whole process of donating to the biobank. She was available to answer all my questions and took the time to listen to me. After, I signed the consent form.
The clinical nurse took several samples of my blood. During the process of donation, the team accompanied me until the end. It was very organized and the experience is friendly for the patient.
What would you say to someone thinking of donating?
I want to encourage fellow patients to donate for the biobank. The process is easy. Every patient can get involved by donating their biological materials. We can all contribute, have a positive impact to improve the lives of patients.
There is a great sense of pride and satisfaction knowing that you can make a difference. Getting more patients donating is essential. Research depends on it. You can play an active role in enhancing scientific knowledge and understanding Parkinson’s, as well as improving the quality of life for patients in the future.
What do you hope comes from your contribution?
Someday, I hope the cause of Parkinson’s will be known. I wish for innovated therapies to be developed to improve quality of life and outcome for Parkinson’s patients. We need a discovery that will slow or stop the progression of this debilitating disease. We need a cure.
What do you think might discourage someone from donating? Why didn’t it discourage you?
Some people might be unwilling to donate because of several reasons such as : privacy concerns, personal belief, having a negative perception of a biobank or being misinformed about the process of donation. There are absolutely no worries. Strict security measures are in place to ensure privacy of donors. All samples or data from patients remain anonymous.
Personally, I have a high level of trust. I knew the importance of donating because there is a great need for researchers to have access from a diverse group of participants. Therefore, I didn’t hesitate to donate. I wanted to do my part for the advancement of scientific knowledge.
To learn more about donating to the Open Biobank, visit: https://www.mcgill.ca/neuro/research/open-biobank/participants
