As a professional musician, Lisa Emrich has devoted her life to music. A common phrase used in the orchestra is to keep one eye on the music and one eye on the conductor. Imagine waking up one morning, on a performance day, and suddenly not being able to see out of one eye. That’s what happened to Lisa 18 years ago. After visiting three specialists in three cities in one day, Lisa was diagnosed with optic neuritis. It wasn’t until five years later that she was diagnosed with multiple sclerosis. Symptoms of MS, such as severe weakness and numbness, have impacted Lisa’s ability to perform the most complicated of literature, but determination and hard work have given her the capacity to adapt to changing abilities.
Lisa has always been a teacher and communicator, but multiple sclerosis brought new passion to her life — writing and patient advocacy. She began her award-winning blog in 2007 which parlayed into speaking, writing, and consulting opportunities. She is a contributor and community moderator for several online health websites. In 2012, the National MS Society (NMSS) invited Lisa to blog from the annual NMSS Public Policy Conference in Washington, DC, which is where she first learned about the Department of Defense’s Multiple Sclerosis Research Program (MSRP). She currently serves on the Virginia Government Relations Committee for the NMSS and advocates for policies to benefit people living with MS and other chronic conditions.
A year after Lisa started cycling for fun and rehabilitation, she and her husband established a bike team — the Low Gear Loungers — to participate in the 2017 Chesapeake Challenge Bike MS event to raise funds for the National MS Society. Lisa hadn’t cycled since college but the joy of racing down the hills with the wind in her face was well worth the hard climbs. The greatest challenges Lisa experiences with her MS while riding her bike are losing feeling and strength in her legs and the risk of falling if she ever rides too slowly.
“I’ve found that staying in motion helps me to move forward in life. No matter how slow or careful I might need to go, I aspire to continue growing and experiencing new adventures,” says Emrich.
In 2014, Lisa teamed up with the Accelerated Cure Project for MS (ACP) to help launch the iConquerMS.org research network, initially funded by the Patient Centered Research Network Institute (PCORI), and later became a patient stakeholder reviewer for proposals submitted to PCORI for research funding. The work that ACP is doing in collaboration with the MS patient community and iConquerMS enables people living with the disease to be more than study subjects, they become valuable members of the research team. Based on her experience and knowledge, the Accelerated Cure Project nominated Lisa to become a MSRP consumer reviewer.
“I am thrilled to contribute to the peer review process and to represent the patient community at large. Discussing the merits of cutting edge research proposals that hold promise to improve MS patients’ lives through neuroprotection and regeneration with scientists who work in the field is exciting and rewarding.” Emrich states, “the passion and commitment displayed during panel meetings was palpable and the respect with which my opinions were received was greatly appreciated. I was obviously accepted as a valued member of the team.”
Witnessing the scientific community’s commitment to identifying and confirming the biological mechanisms that will stop the destructive effects of MS gives Lisa hope that through research multiple sclerosis will be a disease forever changed for the better.
“With firsthand experience serving on the MSRP Peer Review Panel and other merit review panels, I am encouraged to see the research community expand the traditional ideals of expert and peer to include patients and consumers. People living with any given disease, such as MS, become the experts of its impact within their lives; and this accumulated knowledge and experience provide valuable information that no laboratory or MRI can detect,” states Emrich.
“I highly encourage members of the MS community to get involved, whether through research projects such as iConquerMS.org, raising funds for an advocacy organization, supporting each other in our social networks, or participating in the scientific review process through programs such as the MSRP. We each have something to contribute to ultimately improve the lives of those living with and impacted by MS.”
Last updated Thursday, May 26, 2022