I spent my formative years around a lot of complaining – mostly without action. An unlikely source of inspiration to be sure, but watching so much inaction somehow lit a fire beneath me. Turns out I don't much care for feckless grumblings. Consequently, striving to put purpose behind my words is a philosophy I live by. And following an MS diagnosis at age 27, I resolved to use my story only in the context of driving progress.
We each have our own approach to MS. And this isn't exclusive to navigating symptoms on top of juggling life and uncertainty. It's really about how we retain our sense of self amidst all the chaos – holding onto a unique voice that empowers who we are and what we're capable of in spite of this disease. This sense of empowerment is why I became an MS activist.
Rewind to winter of last year. After a third demoralizing exacerbation in less than 16 months, another round of frustrating calls with my insurance company, and parting ways with my second neurologist, I was hungrier than ever for any positive action. There had to be a method for turning this madness into something worthwhile. So, while emerging from a steroid-induced haze, I reached out to the Society about our local Government Relations Committee.
I was immediately struck by the level of enthusiasm at my inquiry. They brought me on board right away, helping me to get my feet wet looking at different legislative and budgeting initiatives, and within a few months I partnered on my first District Assembly visit. Not long after that, I sat down with my Congressman to talk about federal funding for research. Now this was action.
In another six months, I landed in Washington, D.C. for the cherry on top of the advocacy sundae – otherwise known as the National MS Society’s Public Policy Conference. From the moment of arrival, the energy was undeniable. I felt it everywhere—from the 325 MS activists in attendance to keynote speakers and panels, all the way up to Capitol Hill. (And, yes, I'm talking about the same Capitol Hill notorious for partisanship and stagnant politics).
Speaking of politics, here's a bit of motivation: I (and you!) don't need to have any experience with politicians, policy or government. MS activists are a diverse group in terms of background, education, experience and age. All you need is a passion for learning and a willingness to share your story in the context of driving policy change. The rest just seems to come naturally.
So began a wave of momentum. At the Public Policy Conference, I witnessed the power of connections building. While on a congressional visit, another MS activist from my state delegation and I were lucky to meet a legislative director who shared a personal connection to MS and showed immediate enthusiasm in our funding request for the National Institutes of Health (NIH). The NIH is important to our community because each year, the agency supports at least $110 million in MS research projects. Coupled with the $48 million the Society invested in MS research in 2013 and a few million that the Department of Defense funds each year—this is critical to stop disease progression, restore function and, eventually, eradicate MS.
Within days of our meeting on Capitol Hill, the legislative director extended an invitation for us to attend a closed-door roundtable with two members of Congress back home to discuss the importance of medical research funding.
Just four days after our visit in Washington, I had the opportunity to sit around a table back home in San Diego with an intimate group including legislators, patient advocate groups and prominent members of the local research and biotech community. And in a press conference immediately following, I stepped up to the podium – with my Congressman and fellow citizens standing behind me – and gave voice to the importance of research funding for people living with MS.
This success story is just one of many, indicative of all the important advocacy MS activists engage in year-round—all over the country. Getting our faces and our stories out there, having a seat at the table with legislators and other influential elected officials, and sustaining this momentum is crucial to the fight against MS. And I'm proud to be a part of the effort. If you haven't already, I encourage you to become an MS activist today. Get in on the action and help drive change!