iConquerMS, National MS Society Collaborate to Amplify Patient Voices

iConquerMS, National MS Society Collaborate to Amplify Patient Voices

Engaging Thoughts

I am excited and thankful to share with you a new collaboration between iConquerMS and the National Multiple Sclerosis Society (NMSS). For several years, I have worked with the people at the Accelerated Cure Project (ACP), a nonprofit organization that is the overseeing body for iConquerMS, to project the voices of those living with multiple sclerosis into every research conversation and initiative. At times, it has seemed like an uphill battle, but 2018 has shifted attitudes toward the value of the patient experience.

Nowhere is this more evident than in the collaboration the ACP recently announced with the NMSS. The society has always made research its primary focus, but almost exclusively from the perspective of researchers and what they thought we needed. The NMSS’ “Pathways to a Cure” acknowledges the value of the voices of those affected by MS and the contributions we can make to solid research, even if we are not trained scientists. This is a major shift in the value of patient centricity in research.

“We believe that research, and specifically research that keeps those living with MS at its center, is critical to reaching our bold vision of a world free of MS,” said Bruce Bebo, PhD, the society’s executive vice president of research. “We look forward to collaborating further with Accelerated Cure Project and all that we can achieve together in supporting and advancing people-powered research in MS.”

As you may have heard me say before, the main expert on multiple sclerosis is the person living with MS, plus their support team of partners, family, and friends. We know this disease in ways more meaningful than just the science of T-cells, B-cells, and neuroimmunology. It is only logical that those of us who are the true MS experts be included in research that matters and that can be impactful in improving our daily lives. We may not have the knowledge to assist with the science of curing MS, but we must be part of the ongoing research that looks at what is important in our quality of life and daily living activities.

“The National Multiple Sclerosis Society serves a powerful community of people with MS, their care partners, loved ones, family and friends, as well as leading clinicians and researchers across the country,” said Robert McBurney, PhD, president and CEO of the Accelerated Cure Project for MS and co-principal investigator for iConquerMS. “We are excited to expand on our existing relationship with the Society through this effort to increase the power of our shared communities in the fight against MS.”

Each of you reading this can make a contribution to the ongoing work of iConquerMS, the ACP, and the NMSS by sharing your thoughts and experiences with multiple sclerosis. Over 4,700 people worldwide have enrolled, and they participate by sharing their research questions and completing the semi-annual survey on REAL MS (which stands for Research Engagement About Life with Multiple Sclerosis). I would be thankful if you and your family and friends could join me at www.iconquerms.org to help shape this next step in NMSS research.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

3 comments

  1. Dale Degraffenreid says:

    A great idea. Since MS is so unpredictable in people, it would only seem correct to talk with them to further the study for a cure.

  2. KAREN JACKSON says:

    An accomplishment that will hopefully open eyes to the benefit of collaboration, to expedite moving us closer to answering questions to the mystery that surrounds this disease. Kudos to all involved in making this collaboration a reality.

  3. Kevin Keplinger says:

    What a bunch of nonsense!!!! If you really want to help patients with MS you’ll start informing them about HSCT!!! The NMSS is a big part of the problem!! If it wasn’t for their constant resistance to HSCT we probably would have had HSCT recognized as a front line treatment by now. Probably over 90% of NMSS members have never even heard of HSCT!! It’s outrageous what’s happening to the MS community in regards to HSCT!! How many board members of the NMSS have MS?? How many executives at the NMSS have MS?? Probably not many!!!

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