The ALS Association Remembers Greg Merfeld Who Tirelessly Fought to Assist Others Battling Lou Gehrig's Disease

On Sunday, January 22, the ALS family lost a member who made an indelible impact on The ALS Association and the community-at-large.  Greg Merfeld, who was diagnosed with Lou Gehrig’s Disease in 2010, died in his Agoura Hills, California home surrounded by his beloved wife and caregiver, Sheri, and their two children.

Merfeld served as an inspiration to many, and he promoted ALS awareness by working closely with The ALS Association’s Golden West, Greater San Diego, Keith Worthington, and Iowa Chapters.  Aside from his awareness efforts, Merfeld, 51, continually sought to improve the lives of those battling Lou Gehrig’s Disease.  He led the fALS (familial ALS) meeting that preceded the “Ask the Experts” session in October 2011.   Merfeld worked with the Ventura County Community Foundation to establish a college scholarship fund benefitting children whose parents have ALS http://www.vccf.org.  In addition, he shared his personal experiences with the disease through his blog, “ALS Everyday Living.”

“Greg was a motivational force in the ALS community,” said Association Chief Public Policy Officer Steve Gibson.  “His participation in the ‘Ask the Experts’ session last fall illuminated the many challenges people with this disease and their families face.”  More than 150 Californians attended the session in Los Angeles, where they directly interacted with scientists and clinicians who presented the latest in ALS research findings.  An additional 45 individuals also participated in this event via live stream.

“The ALS Association mourns the loss of a remarkable man who will continue to inspire us to find the causes, treatments and a cure for Lou Gehrig’s Disease,” said Association President and CEO Jane H. Gilbert.  “Greg refused to let this disease curtail his activities and advocated on behalf of all families battling ALS.”

Merfeld had familial ALS, a form of the disease that accounts for 10% of the ALS population, and lost two fraternal uncles, an aunt and 20 other relatives to the disease.  An inherited genetic mutation causes familial ALS.

Earlier this month, The ALS Association honored Merfeld with its “Heroes Living with ALS Award” during its annual leadership conference in Nashville, Tennessee.  The award recognizes people living with ALS who have demonstrated exemplary service and support to the ALS community.  Fred Fisher, President and CEO of the Golden West Chapter, introduced Merfeld, who appeared in a pre-recorded video taped at his home, to the conference’s attendees.  In the video, Merfeld holds his award and asks The Association “to keep up the fight.”

“Greg embodied strength, courage, and conviction,” said Fisher. “He galvanized the Chapter—and many in the ALS community—to persist in eradicating this insidious disease.”