Volunteering for MS Research: Finding Opportunities
After I got over the shock of my multiple sclerosis diagnosis, one of the first things I wanted to do was volunteer. Giving back felt like a necessity and not a choice. I really wanted to do something to help myself and everyone else with multiple sclerosis. It did not sit well with me to feel helpless.
Physical and financial barriers to volunteering
Having never volunteered for a large cause, I wasn’t sure where to start. Like most people, I started with a Google search. There were a lot of results around volunteering. Most of the opportunities involved doing things I am not capable of. I cannot participate in a run or a walk. I was in the middle of a second Master’s degree, so my time was limited. One of my major symptoms is fatigue. That means I did not have a lot of energy. It was disheartening. I definitely did not have the funds to do large donations. Then I got very lucky and stumbled on how I can contribute through research.
Showing my neurologist my willingness to help
My first research act was to donate extra vials of blood and spinal fluid. I figured since they were already drawing them, why not toss in some extra ones for research. I was asked to do this by clinicians at my neurologist's office. I was fully informed and happy to do something. This willingness to help the first time lead to my next two opportunities. Volunteering seemed like a way to take back some power.
Participating in clinical studies
I was a complete multiple sclerosis newbie when I was diagnosed. Since I had never had any recognizable symptoms, I was a clean slate. I had not gone back and forth with medical professionals as most MS patients do before they learn it is multiple sclerosis. I had no previous major medications in my past. This was how I was first invited to participate in a clinical research study for medication. At the same time, I was in a wellness research study. Both of these research opportunities were convenient I was at my doctors' office anyway. I participated because I was asked.
Katina was a patient advocate who happened to be sitting next to me at an MS dinner. Near the end of the meal, she turned to me and mentioned iConquerMS (ICMS), an organization that focuses on patient-centered research. Through ICMS, I learned about the myriad ways to contribute to research. Giving blood or spinal fluid or testing a disease-modifying therapy (DMT) are NOT the only way to help with multiple sclerosis research.
Understanding how research works
Before you take your first steps to giving back through research, be sure to read about how research and clinical trials work. The Department of Health and Human Services provides us with a wealth of information on their website.
Finding research opportunities
Research studies and clinical trials are out there and looking for you.1
- The very first place to start is with your own healthcare provider. It is quite possible that they are familiar with participating in research. On your next contact or visit, you can ask them if they know about any opportunities.
- Check online with the federal government at ClinicalTrials.gov.
- Signup to donate to a multiple sclerosis database like North American Research Committee on Multiple Sclerosis (NARCOMS).
- IConquerMS and other patient-centered organizations are always looking for new members to advocate for MS patients’ voices in research.
- Donate to tissue banks or to DNA research.
Starting your own journey
These are only a few ideas and resources to help you start your own journey. Research is how we get to not only a cure for multiple sclerosis but more insight into how we can live better with this disease. Please know that you may not qualify for any of the clinical trials and research studies. It is not a judgment on you or your health. I know I was disappointed that I was not accepted in many studies. However, just the fact that you are willing to volunteer is the most important part! I wish you the best of luck in your own journey towards participating in multiple sclerosis research.
Does your employer provide workplace accommodations due to your MS?