Monday, February 11, 2013

I'm an MS activist

Cyndi Zagieboylo
President & CEO, National MS Society


As I look forward to the Society’s Public Policy Conference next month, I must pause to think about what makes an “MS activist.” People have shared with me hundreds of “MS stories” in my many years with the Society – stories of struggle, pain and heartache, as well as stories of optimism and the power of possibility. 

It’s clear to me that each and every person behind each and every MS story is a potential activist. Each story of struggle, of hope, or of connections made is fodder for MS activists to drive real-world change. It is the power of possibility – demonstrated by how far we have come – that fuels our collective action. 

It is also those stories that make the unified voice of the MS movement heard in this challenging political and economic climate. We may not realize it, but legislation and policy affect our lives each and every day. Whether it’s access to care, disability rights or cost of therapies, personal stories helped shape these policies and can help change them for the better. 

Think about the Americans with Disabilities Act (ADA). Only through significant grassroots advocacy and members of Congress championing the cause was the ADA passed, affirming people with disabilities’ equal rights and setting standards for equal access to the community and employment. Not all policy is as monumental, but it is all important. Leading up to – and beyond – the Public Policy Conference, expect to see more stories of MS activism and the change it drives on this blog.

At the Public Policy Conference, more than 300 MS activists from all over the country will gather in Washington, D.C., to learn more about policy issues that are relevant to Congress and to our community. They will then make more than 300 in-person visits to U.S. Senators and Representatives to raise awareness about MS and ask that funding for MS research and the Food & Drug Administration (FDA) be preserved.  

Medical research funding is seriously threatened in the current economic climate; we must speak out to protect MS research that will fuel future solutions to STOP MS in its tracks, RESTORE lost function and END MS forever. The FDA ensures that drugs and medical devices are safe and effective for public use and provides Americans with confidence in new treatments and technology. We will ask Congress to ensure adequate funding so the FDA can continue to evaluate therapies in a timely way.

Whether or not you’ll join us in D.C. next month, I ask that you put on your MS activist hat (if you don’t think you have one – just look – you do! You have a story to tell!) and support efforts for our policy issues through digital activism. In addition to supporting our policy issues, as always, we’ll urge legislators to join the Congressional MS Caucus and support MS Awareness Week, March 11-17. You can too, by joining the MS Activist Network.


I am an MS activist. You are an MS activist. We are all MS activists, and together, our activism knows no limits. 

P.S. Do you have a story to share? Please comment below or complete our survey.

4 comments:

  1. I am an MS Activist, I want, someone to tell me why my Mother Passed with MS, why I have MS, and what do I tell my children,my siblings their kids and my own grandchildren when they worry as they watch me deteriorate.
    Remove the 'unknowns',replace 'hope' with fact and promise this disease will not be forgotten, dismissed as '?' and undershadowed by other 'Rising Stars' of mystery illnesses. Fibromyalga, Parkinson's, arthritus,type 2 diabetes, and all of the other notable and serious afflictionss. Keep MS in the forefront and reconized as although a mystery it is deserving the publics attention.

    ReplyDelete
    Replies
    1. honestly i was diagnosed with MS 3 years ago and i did a simple parasite cleanse twice a year and they have never come back. have you ever done one? a few other natural treatments as well i can share with you. visit my website. all these diseases nowdays have the same symptoms. odd dont you think? so did i. we have already cured two women including myself

      http://tracyburrell.vpweb.com/

      Delete
  2. honestly i was diagnosed with MS 3 years ago and i did a simple parasite cleanse twice a year and they have never come back. have you ever done one? a few other natural treatments as well i can share with you. visit my website. all these diseases nowdays have the same symptoms. odd dont you think? so did i. we have already cured two women including myself

    http://tracyburrell.vpweb.com/

    ReplyDelete
  3. Would you please bring it to the attention of the policy group that we need stem cell therapy? Here's a good example
    http://www.nationalrighttolifenews.org/news/2013/02/kansas-lawmakers-urged-to-open-adult-stem-cell-center/#.UR1uSKU4sq7

    ReplyDelete