Saying Yes to Research
During one of my first visits with my neurologist, he asked me a question that has changed my life completely.
“Are you interested in volunteering for research?”
I was already doing all that I thought I could for a world free of MS. I had a Walk MS team to raise money and was involved in MS activism. Volunteering for research is an action step that I wasn’t aware of, but one that I felt ready to take.
I signed my first clinical study consent the day my neurologist asked that question 9 years ago, and I have been volunteering ever since. I haven’t had any moments of feeling worried or scared during my experiences, and I attribute that to the thoroughness of the researchers explaining every detail of what I was signing up for, and preparing me for all steps of the study and possible outcomes.
My experiences as a research volunteer have spanned a wide spectrum of projects. Everything from a simple DNA cheek swab to an extra tube of blood during my regular lab tests and 2 lumbar punctures. Some studies have involved answering questionnaires or documentation of my diet through taking pictures of my meals and wearing an activity tracking device. A high point for me was volunteering to take a medication that has now shown causes remyelination.
I also took a vitamin supplement that resulted in no measurable change to my disease progess. To the outside world that may have looked like a waste of time, but to me, it was not. All results provide researchers with valuable information and help direct what approach to take next.
Altogether, I have been in about 15 trials and studies. I feel I am contributing in the most valuable and impactful way I can to the fight to end MS. Researchers are also often looking for people not diagnosed with MS, a perfect opportunity for our allies and advocates to support our fight.
Saying yes to research doesn’t mean yes to every single opportunity, but yes to a certain mindset and attitude. I say yes to the possibility that I am the right person for the right research project somewhere. I say yes to the willingness to be a volunteer so that MS stops with my generation and doesn’t affect my daughter’s. I say yes, believing that not only are cures possible, but I am hopeful I can, in some small way, help find it.
The cures for multiple sclerosis are out there, and researchers around the world are all pulling together to get to that goal as fast as they can, but it is going to take fully funded research with diverse volunteers to finally stop MS, restore what’s been lost, and end MS forever.
Editor’s Note: to learn how you get involved with research, visit the Society’s website.