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My contribution to MS research - sorry for the length
Hi folks! I just wanted to share about an incredible experience that I had with the MS Society of Canada recently.
I was selected last fall to be a Community Representative for the Society. There were approximately 12 of us selected across Canada and we were each assigned to one of three committees of researchers and scientists to review their annual research grant proposals.
My committee had 4 MS Reps, 10 scientists/researchers and was chaired by a highly respected head of neurology at a prestigious university here in Canada. Each Rep was assigned a list of proposals and asked to provide feedback on the proposals’ relevance to MS and whether or not the lay summary would be understood by the general public or other MS patients. We submitted this feedback via the online grant application system after weeks of review work that we completed in November and December. This feedback will be provided to each applicant for future reference whether their application is considered further or not.
We were then invited to participate when the committee met in person to score the proposals. My committee reviewed and scored 84 proposals over the course of one and a half days from students looking to complete Masters, PhD or post-doctoral work. Our highest scoring applications, will be forwarded to the Medical Committee for funding approval in February.
When each application was reviewed and discussed at the table, the Community Rep assigned to that proposal was asked to give the group their feedback on the lay summary and relevance to MS.
The committee members were practicing neurologists, professors of neurology, neuro-immunologists, microbiologists, pharmacists, etc., all with different specialities. MRI technology, pediatric MS, cognitive function in MS, T cells, regenerative medicine, etc.
I was amazed at the amount of research being considered and what was already in progress (some of the applications were renewals). What really struck a chord with me was how much the committee members were dedicated to the treatment of and finding a cure for MS.
From animal models used to mimic MS, to genetically engineered mice to a 7.0 Tesla MRI machine, I have a learned a great deal about MS research in Canada and what is being contributed to those of us living with this disease. I was humbled by their genuine interest in what MS patients had to say.
I learned recently that this sort of initiative is a relatively new concept in research called Patient Engagement. I welcome the opportunity to do this again next year and will submit an application again when the time comes. Sadly, we are limited to doing this only on two occasions. Fair enough, I suppose, to give others a chance at this amazing opportunity.
Sorry this is so long but I was so excited that I wanted to share as much of my experience as I could.
Corrie
I was selected last fall to be a Community Representative for the Society. There were approximately 12 of us selected across Canada and we were each assigned to one of three committees of researchers and scientists to review their annual research grant proposals.
My committee had 4 MS Reps, 10 scientists/researchers and was chaired by a highly respected head of neurology at a prestigious university here in Canada. Each Rep was assigned a list of proposals and asked to provide feedback on the proposals’ relevance to MS and whether or not the lay summary would be understood by the general public or other MS patients. We submitted this feedback via the online grant application system after weeks of review work that we completed in November and December. This feedback will be provided to each applicant for future reference whether their application is considered further or not.
We were then invited to participate when the committee met in person to score the proposals. My committee reviewed and scored 84 proposals over the course of one and a half days from students looking to complete Masters, PhD or post-doctoral work. Our highest scoring applications, will be forwarded to the Medical Committee for funding approval in February.
When each application was reviewed and discussed at the table, the Community Rep assigned to that proposal was asked to give the group their feedback on the lay summary and relevance to MS.
The committee members were practicing neurologists, professors of neurology, neuro-immunologists, microbiologists, pharmacists, etc., all with different specialities. MRI technology, pediatric MS, cognitive function in MS, T cells, regenerative medicine, etc.
I was amazed at the amount of research being considered and what was already in progress (some of the applications were renewals). What really struck a chord with me was how much the committee members were dedicated to the treatment of and finding a cure for MS.
From animal models used to mimic MS, to genetically engineered mice to a 7.0 Tesla MRI machine, I have a learned a great deal about MS research in Canada and what is being contributed to those of us living with this disease. I was humbled by their genuine interest in what MS patients had to say.
I learned recently that this sort of initiative is a relatively new concept in research called Patient Engagement. I welcome the opportunity to do this again next year and will submit an application again when the time comes. Sadly, we are limited to doing this only on two occasions. Fair enough, I suppose, to give others a chance at this amazing opportunity.
Sorry this is so long but I was so excited that I wanted to share as much of my experience as I could.
Corrie
That sounds awesome Kyle, good for you!
I enjoyed learning about the grant application/scoring/approval process. I had no idea how much effort goes into these things.
To know what is being worked on and all of the ideas out there, is simply amazing.
C.
I enjoyed learning about the grant application/scoring/approval process. I had no idea how much effort goes into these things.
To know what is being worked on and all of the ideas out there, is simply amazing.
C.
Good stuff! We spend a lot of time sitting on the sidelines waiting for others to decide our fate. We can help guide the mission by getting involved!
Last weekend I became involved with The Accelerated Cure Project for MS and its patient centered arm iConquerMS. Next week I will attend the research grant request review meetings of the NMSS. To use a trite expression, Knowledge is Power. It's our future. It's up to us to be involved.
Great stuff Corrie!
Kyle
Last weekend I became involved with The Accelerated Cure Project for MS and its patient centered arm iConquerMS. Next week I will attend the research grant request review meetings of the NMSS. To use a trite expression, Knowledge is Power. It's our future. It's up to us to be involved.
Great stuff Corrie!
Kyle
Corrie - that sounds like an AMAZING opportunity!! How wonderful to learn about new areas for advancement from thought-leaders around Canada. While I can only imagine how exhausting that trip was (I think I got tired just reading about all of the work you did!), you must be elated at having contributed to future research that may one day result in a cure.
Thank you for sharing your experiences with us and for volunteering your time. Welcome home!
Cheryl
Thank you for sharing your experiences with us and for volunteering your time. Welcome home!
Cheryl
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