MS Awareness Week: Become an MS Activist!

  • MS Awareness Week, March 12-18, 2012.

    Each year the National MS Society sets aside one week in March for MS Awareness.  Representative Barbara Lee (CA-9), an instrumental member of the U.S. House of Representatives Multiple Sclerosis Caucus (MS Caucus) and whose sister has MS, authored the first-ever annual Congressional Resolution honoring MS Awareness Week.  The Multiple Sclerosis Foundation claims the entire month of March for MS Education and Awareness Month. 

    Today, the 12th anniversary of going blind due to optic neuritis, is my day to share a recent MS experience with you.

    Last week, I attended the 21st Annual National MS Society Public Policy Conference in Washington, DC.  This was my first time to attend such a conference.  The National MS Society asked me to blog details of the conference and I had the honor of interviewing several attendees.  Very cool. 

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    In preparation for the conference, I contemplated the meaning of advocacy and activism here in HealthCentral.  While I saw advocacy and activism in very similar lights, I was not yet ready to use the term ‘activist’ to describe myself. 

    I am a patient advocate.  I help to educate and support others.  I speak up on behalf of MS patients at home and abroad.  I advocate for improved services when speaking with companies who cater to the MS community.  I volunteer much of my time and energy to connecting members of the MS blogging community.  

    But last week I got my first taste of real activism.  I ventured beyond my typical experience as an advocate to actively participate in asking my U.S. Representative to support specific public policies which would benefit persons living with MS, disability, and other diseases.  I became an MS activist.

    Initially I was intimidated.  I was concerned that I would not know enough about the proposed legislation to be effective in discussing the issues with lawmakers.  I should not have worried.  If anything the conference experience taught me that becoming an MS activist is super easy!

    I was impressed with how well the conference sessions were designed to prepare attendees to take important messages to meetings with our lawmakers and their legislative assistants.  We were given the background information necessary to frame our requests are were equipped with context, numbers, and facts.

    This year’s focus was on increased funding for MS research, through the National Institutes of Health (NIH) and the Congressionally Directed Medical Research Program (CDMRP) which is part of the Department of Defense, and on reauthorization and funding for the Lifespan Respite Care Program which is intended to expand and enhance services for family caregivers in statewide respite programs.  We also asked lawmakers to join the Congressional MS Caucus, established in 2007, which now has 130 members in the U.S. House of Representatives and 26 members in the U.S. Senate.

    How does one become an MS activist?

    If you are interested in becoming an activist, the first thing you must do is to express that interest.  You do not have to do this alone. 

    • Contact your local chapter of the National MS Society and let the Government Relations team know you want to help. 
    • Get involved in your state advocacy efforts.  
    • Find out what’s going on at your state capitol and learn about the issues.
    • Jump in and volunteer anywhere you can, contacting legislators or visiting district offices.
    • Sign up for action alerts sent out by the National MS Society 
    • Take advantage of virtual advocacy opportunities through blogging, twitter, or email campaigns.
    • Follow @MSActivist on twitter and read the blog to stay informed.

    A few additional things I learned on Capitol Hill

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    • A Congressman’s office may receive 400 emails each day; personalize your email and provide a way for the Congressman to return your inquiry. 
    • Letters mailed to members of Congress may take up to six weeks to be received due to a stringent security screening process; place a phone call or send an email instead.  
    • Some lawmakers want to hear your story and others only want to know the facts of your request (bill numbers and dollar amounts).  
    • It takes a long time to get into the House office buildings first thing in the morning.  
    • Wear comfortable shoes and bring an assistive device if you need one.

    Most important take away - Your visit, email, or phone call is just the beginning of establishing a relationship with your Congressman and his/her Legislative Assistant.  Follow up after your initial contact to keep the conversation going.  The office WANTS to hear from you!!

    Become an MS activist and represent the needs of the MS community.

    As Sarah Keitt expressed during our interview, “If you don’t get involved with advocacy, no one else is going to do it for you. It’s up to us, as people with MS, to make sure that the funding for research is there, that services for people with MS and other disabilities are there. It’s really critical that we get involved in any way that we can!”


    Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.

Published On: March 13, 2012