Cathy Chester | An Empowered Spirit

How Multiple Sclerosis Patients Can Take An Active Role In Expediting Research

The beginning of a new year is a chance to wipe the slate clean and begin a new journey filled with hope and possibility. I visualize that journey as climbing a majestic mountain that rises high above the ocean. With each passing mile I get closer to accomplishing another goal. When I finally reach the pinnacle I’ll feel more alive, mindful of my glorious achievements while enjoying the magnificent view that envelops me.

Multiple Sclerosis

Each step I climb represents my personal goals. And one of those goals is to continue spreading awareness about living with Multiple Sclerosis.

Reaching the top of the mountain would mean that a cure has been discovered, finally putting an end to this horrible disease.

Will I reach the top in my lifetime? I’m not clairvoyant but I always hold hope in my heart.

That is why I take part in NARCOMS (North American Research Committee on Multiple Sclerosis), a bi-annual online patient registry where I answer questions about my life with MS. I feel good knowing that I’m part of a greater good, because my answers ultimately help to facilitate multi-center research about MS.

“NARCOMS, a project of the Consortium of MS Centers, is a patient registry that was founded in 1995 and contains patient-driven information on over 37,000 patients. Information from NARCOMS has enhanced research activities regarding demographics of MS as well as environmental factors involved in disease activity (vitamin D, smoking). “~June Halper, APN-C, CEO of CMSC, Executive Director of IOMSN, MSNICB

Anyone diagnosed with MS can sign up for this free, confidential registry. Like me, the information you provide will supply valuable information that expedites research and improves clinical care and quality of life issues for patients and families affected by MS.

Multiple Sclerosis

Questions such as demographics, disease history, quality of life, functionality, and relapse and symptom progression are a sample of what you’ll be asked.

NARCOMS also publishes a quarterly magazine, NARCOMS Now (free to all NARCOMS participants),that features MS news and information about the registry. The Winter 2015 edition focuses on health and wellness and is filled with interesting information. I was fortunate to be interviewed for their Feature Focus story.

 Multiple Sclerosis

Check out the NARCOMS website and sign up for their registry. While you’re there take a look at the NARCOMS Now page to find the latest MS news and information, and learn about NARCOMS MS apps and photo contests. Click the PLAY tab to give your brain a workout with their word puzzles.

If you want to learn more about the purpose and participation benefits of NARCOMS, here’s Dr. Daniel Kantor interviewing Dr. Gary Cutter, Director, NARCOMS Data Coordinating Center.

I hope you’ll join me on my journey to the top of the mountain!

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10 thoughts on “How Multiple Sclerosis Patients Can Take An Active Role In Expediting Research

  1. Karen D. Austin

    It’s interesting to see what kind of ground-level research is going on. There is so much more information than even just 50 years ago. All my best to the MS researchers, MS physicians and–particularly–those living with MS. I hope that the increase in knowledge can lead to better treatment and lead to a cure. And kudos to you for all that you do as an advocate.
    Karen D. Austin recently posted…Diverticulosis & DiverticulitisMy Profile

  2. Helene Cohen Bludman

    You are doing the MS community a great service by sharing your wisdom. I hope you do reach the top of that mountain!

  3. Lisa Guerra

    I am 53 years old and living wih MS. I am sooo depressed every day, I actually can’t remember the last time that I smiled!

    1. Post author

      I am sorry you are having such a difficult time, and I hope you have loved ones or some kind of a support group to help you through such a difficult time. Don’t be afraid to reach out to get help.

      Best to you and thank you for leaving your comment, Lisa.

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