by Cyndi Zagieboylo
When I wrote about finding a cure for multiple sclerosis in this column last year (Forward, Summer 2018), I asked, “What does a cure mean to you?” I received many replies that were powerful and moving. A cure can be described in several ways that can be categorized as follows:
- Stop MS in its tracks: No additional damage, no progression of the disease.
- Restore what has been lost: Get back the abilities I had before I had MS, a reversal of symptoms.
- End MS: No one else gets diagnosed with MS.
For some, a cure means one of these definitions specifically. For others, it means all of them. A sampling of what I heard:
“My idea of a cure is first things, first— whether it is relapsing, progressive or whatever—just stop it from getting worse.” —Rand Garrett
“To me, a cure means I can walk, run, skip, jump again. I can think of what to say. I will feel alive, play with my granddaughter. It means to live a normal life, to be able to walk next to my husband, have friends and go out for lunch and shopping again, just like I used to.” —Jayne Almonrode
“A cure means complete eradication of this terrible disease, not just slowing its progress or relieving symptoms. Eradication means no one will ever get it again. A cure also means people like myself who already have MS will be able to have the damaged myelin and nerves repaired and restored to normal function. Yes, I want it all before I will call it a cure.” —Marge Carter
At the National MS Society, we are relentlessly pursuing the fastest path to a cure for MS (see our FY2019 to 2021 Strategic Plan).
Our approach is to seek input from experts—scientists and clinicians with various expertise—as well as people affected by MS because no one knows their MS better than a person living with the disease. We invest more than $40 million a year in innovative research and expanding the MS research workforce while we promote collaboration and shared learning to speed discoveries. We launched a global conversation: “What are the specific pathways to the cures that people with MS want and need?” We strive to gain international consensus to focus worldwide investments in MS research to get us down those pathways quickly, investing in the research that has the most promise.
To achieve a Stop Cure, we need to understand what causes MS disease activity to flare up. A Restore Cure requires therapies that will promote repair, getting the central nervous system to heal and get back to a pre-MS state. The End MS Cure pathway starts with knowing the cause of MS and who is at risk for the disease.
We have brilliant, passionate, committed people working on these pathways. I hope you have the opportunity to meet some of them, and when you do, to share your perspective and your encouragement.
I love hearing what’s on your mind. What are you thinking about these days? What do we, at your MS Society, need to know about you?
President & CEO
National MS Society
Let me know your thoughts. Email me at firstname.lastname@example.org.