Making A Difference
People affected by MS and other chronic illnesses are influencing research and legislation that will shape the future . And there ’ s more than one way to get involved .
Participating In Research Studies
In a 2023 review of clinical trials in MS over the previous five years , researchers found only eight that described patient and public involvement as part of articles or protocols . 8
One such study , the OCTOPUS Trial , was co-designed by people affected by MS . And , people with MS will continue to be involved with different aspects of the trial throughout its timeline . The trial will test multiple treatments to see if they can stop or slow down progressive forms of MS . The OCTOPUS trial is currently recruiting participants at sites throughout the United Kingdom . You can learn more about clinical studies around the world at Clinicaltrials . gov .
Another way to help advance research is by sharing data with registries such as the NARCOMS Global Patient Registry , the UK MS Register , and the National African Americans with MS Registry ( NAAMSR ).
Jon credits big data , which allows researchers to analyze massive amounts of information , with driving some of the most important advances in recent years . But , the accumulation of big data depends on people .
“ Research doesn ’ t get very far if we don ’ t get people to participate in it ,” says Jon . “ It ’ s incredibly empowering to be part of the engine driving the future .”
Advocacy
From digital activism to direct engagement with legislators and everything in between , MS advocates are on the front lines of change .
Meet Kathy Smith
KES Business Consulting , LLC , Connecticut
A trained pharmacologist , Kathy worked in the pharmaceutical industry for many years . She has also worked as a consultant to healthcare companies and health-focused foundations .
Diagnosed with MS in 2004 , Kathy worked in a professional capacity with the research team of the National MS Society on several strategic efforts , including the initial Fast Forward program and investments , assisting in the development of a Wellness strategy , and in driving priorities and initiatives of the Progressive MS Alliance . Kathy retired in 2022 to pursue new interests , including grandchildren and travel adventures . Her MSrelated activities include the following :
• NARCOMS : Surveys and providing data for research purposes
• iConquerMS ( launched by the Accelerated Cure Project for MS ): Surveys and contributing data for research studies
• PCORI ( Patient Centered Outcomes Research Institute ): Review panels to look at grants relating to relative effectiveness of various MS therapies
• NMSS : Research and Legislative Advocate both locally and nationally ; providing the “ person with MS ” perspective to the Scientific Advisory Committee ; participation in the Pathways to Cures initiative ; attending State Action Days ; meeting with local legislators to discuss annual priorities for legislative action and raise MS awareness ; 2024 local chapter trustee ; fundraising via Challenge Walk , Climb to the Top for MS , and Walk MS
For those looking for a place to start , Kathy suggests the NMSS website for reliable , scientifically backed information and resources to navigate a diagnosis and find ways to get involved .
7