Make a Difference for the Future of MS

Vicki Health Guide
  • There are many ways people touched by MS can make a difference.

    My hero Sylvia Lawry made a difference when her brother had MS and she took out a newspaper ad to see if anyone had found a cure. After many responses she found no cure, but she did find many people touched by MS who felt helpless she did. As a result she started an association to give MSers and their families a central place for information. It eventually became the National MS Society. She continued to found both domestic and international associations and then an international network providing information and research — now that is someone who made a difference.

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    Researchers do, too. Dr. W. Ian McDonald  identified the relationship between MS and myelin, helped develop Visual Evoked Response tests, and simplified MS diagnoses by using the MRI and identifying criteria. Other researchers are recognized with the MSIF Charcot Award and inspire others to join the MS cause.

    Walk MS, a National MS Society signature fundraising event encourages individuals to participate. One of my favorite online friends is a walker who consistently makes a difference here. Michael B. Gerber has had a walking team for years called JiggyWiggits. The 2011 JiggyWiggits team earned at least $32,000. I volunteered signing in walkers, then distributing t-shirts. Besides Walk MS, NMSS also has an annual fundraiser for bike riders.  

    People who are willing to participate in clinical trials help improve treatment and get closer to an MS cure. I have been following Jeri Burtchell for years as she participates in a clinical trial for the first MS disease-modifying drug. She shares this experience on her first blog,  Fingolimod and Me. After the name of the drug was changed, she started a new blog named Gilenya and Me.

    And then we all have one last chance by donating organs and tissue when we die. ylabdad asked late in 2009 if a person with MS can donate an organ to be transplanted.

    Apparently, many people with chronic conditions assume organs cannot be donated, so they do not even register. I am registered, and I hope my donation helps.This is such a great question, and I have seen it asked many times, but rarely answered.

    Last summer (July 2010), I wrote an article that included a suggestion to donate organs and tissue.  Organs are screened, so the answer is yes.

    An organ or tissue can also be donated for research. The National Institutes of Health (NIH)  has a branch for Neuroimmunology where they do research specifically for the National Institute of Neurological Disorders and Stroke (NINDS), and MS is a neurological disorder.
    This is such a great idea, and I think we should tell more people who are probably questioning, just as ylabdad did, if a donation can be useful.  The National MS Society (NMSS) funds three tissue banks and provides contact information for a fourth. What a nice way to make a difference.

    I will end with a quote I used in my in 2010 article that tells how much a donation can mean.

    What we do for ourselves dies with us.  What we do for others and the world remains and is immortal.

    ~Albert Pine


Published On: August 16, 2011