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Wednesday, July 10, 2019


Principles and Current Evidence
A Consensus Paper by the Multiple Sclerosis Coalition

Purpose: The purpose of this paper, which was developed by the member organizations of the Multiple Sclerosis Coalition*, is to summarize current evidence about disease modification in multiple sclerosis (MS) and provide support for broad and sustained access to MS disease-modifying therapies for people with MS in the United States.

Click here to download the PDF

Development Process: The original writing and development team comprised of professional staff representing the Coalition organizations (Rosalind Kalb, Kathleen Costello, June Halper, Lisa Skutnik and Robert Rapp) developed a draft for review and input by nine external reviewers (Brenda Banwell, Aliza BenZacharia, James Bowen, Bruce Cohen, Bruce Cree, Suhayl Dhib-Jalbut, Daniel Kantor, Flavia Nelson and Nancy Sicotte). The reviewers, selected for their experience and expertise in MS clinical care and research, were charged with ensuring the accuracy, completeness and fair balance of the content. The revised paper was then submitted for review by the medical advisors of the Coalition member organizations.

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This Article is Provided by:  #MSViewsandNews

Tuesday, July 9, 2019

How I’d Like To Step Up My Advocacy Game - by Cathy Chester

written by Cathy Chester, MS Patient Advocate
As a child I could run, play the game “tag” or “kick-the-can” with the neighborhood kids, ride my bike from town to town, and when I was older squeeze a lot into a day without napping. But in 1981 that all changed when my right leg and hands became weak and numb, walking was difficult, I’d lose my balance and fall to the floor, and unrelenting fatigue confined me to bed. 
By the time I was twenty-eight, my symptoms were worse and I consulted a neurologist. He ordered a ct scan and spinal tap that immediately revealed I had multiple sclerosis.
I was shocked, angry, overwhelmed and scared. There was no FDA approved MS medications and the internet was in its infancy. I felt alone with nowhere to turn for help.
Those were the darkest days I’ve ever known.  My diagnosis changed the trajectory of my journey as I headed down an alarming blind path.  
Today at the age sixty, I reflect on over three decades of surviving, evolving, regrouping and flourishing. As my symptoms progress incrementally there are certain attitudes I’ve adopted over the years that I lean on:
  • There’s nothing I can do to change the fact that I have MS, so be grateful for the abilities I still have.
  • I can keep abreast of the latest research and findings that may help my symptoms. 
  • No matter what I face I hold onto hope, positive thoughts and the realization that I can battle this disease like the true warrior I am. Thirty-three years have proved that.
  • I won’t allow MS to define who I am.
  • Living a life of purpose and compassion fills my soul, and how I face my illness may be an example for others to face theirs.  
  • My new normal revealed from the start that advocating for others in my community is my life’s mission. If even one person says I’ve made a difference in their lives, then I am the happiest woman there is.
Why am I retelling my story? To quickly reiterate who I am, what I do, why I love being an advocate and Patient Leader and what I actively want to see happen, that is precision medicine, a better quality of life for all and a cure.

This Article is Provided by:  #MSViewsandNews