Ms. Fiona Hoey: On the "Front Lines of the Next Big Thing" in Multiple Sclerosis
Her first foray into advocacy was to join the National MS Society. She wanted to be in a position to go face to face with legislators so that they would see the full range of effects MS has on patients. While attending the MS Public Policy conference in Washington, DC, Fiona learned about the Congressionally Directed Medical Research Programs (CDMRP), the range of programs it manages (including, now, the Multiple Sclerosis Research Program, or MSRP), and the opportunities for consumer advocates to get involved in identifying the best MS research. Of this, she says, "I knew from the get go that I wanted to be a part of it."
Fiona reflects upon her earlier belief that MS would eventually be seen as a curable disease, but that a cure was not likely to happen in her lifetime. After working as a consumer reviewer for both the Peer Reviewed Medical Research Program and the MSRP, however, she experienced a profound change of heart. She now believes that she will “bear witness to this disease changing its course." She has seen firsthand not only the "commitment of the scientific community to finding a cure," but she can also testify to "the quality of proposals submitted for funding." Fiona adds, with conviction, "Because the CDMRP seeks high-risk, [potentially] high-reward proposals, I just know I am on the front lines of the next big thing, and that is a thrill in and of itself."
In her role as a consumer reviewer, Fiona sat at the table with researchers who "work the bench daily to eradicate (or ease) MS," so it was an eye-opener for her, she says, when these researchers thanked her for sharing her perspective. This indeed is what makes this program so special, in Fiona's eyes. "Consumers are giving something to the scientific community by offering glimpses of their life. A lab rat," she notes, "could never do that!"
Last updated Wednesday January 27 2016