October 27, 2022
The Golden West Chapter of The ALS Association will honor California state healthcare advocate, Jeremy Merz, as the Dean and Kathleen Rasmussen Advocate of the Year at their Champions for Cures and Care gala on Friday, January 20, 2023 at the Hyatt Regency San Francisco Airport in Burlingame, CA. This inspirational and informative event celebrates individuals and organizations whose contributions and efforts advance the Chapter’s mission critical activities.
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease, is a fatal, neurodegenerative illness that affects nerve cells in the brain and the spinal cord. The average life expectancy of a person with ALS is two to five years from diagnosis. As the disease progresses, people with ALS lose the ability to walk, move, speak, swallow and, eventually, to breathe – all while the mind and senses continue to function. Veterans are at twice the risk as those who have not served in the military. Currently, there are no known causes or cures for ALS.
Supporters of the ALS community are invited to enjoy an elegant and festive evening featuring cocktails and wine tasting; a silent and live auction; gourmet dinner; special guest appearances; entertainment; and the presentation of the Golden West Chapter’s highest honors, The Essey Awards, which include the Rasmussen Advocate of the Year Award. Named for one of the Chapter’s founding board members, San Francisco’s Richard “Dick” Essey, the prestigious Essey Awards are given annually for outstanding efforts in support of mission priorities in ALS research, care services, and advocacy.
This past year, Jeremy Merz leveraged his professional expertise and network to improve access to care and accelerate the search for effective treatments and cures for ALS. He is the Department Vice President, State Government Relations for American Property Casualty Insurance Association. As a California lobbyist, Merz worked closely with the Golden West Chapter leadership to advance a one-time allocation of $2,000,000 in state funding in support of the organization’s Wraparound model of care.
This additional funding will fuel essential care services, the development of two new Certified Treatment Centers of Excellence (CTCE) and will support five multidisciplinary satellite ALS clinics. The funding will also cover costs for durable medical and communication equipment and will offset out-of-pocket costs for respite care for ALS families. The request was approved by Governor Newsom in the 2022 Budget Act. This victory for the ALS community is particularly poignant, given Merz’s diagnosis with ALS, in March 2022, at the age of 42.
“I am truly honored to receive this recognition from the Golden West Chapter, and it is humbling to receive an award that has been bestowed on great champions in the fight against ALS,” said Merz. “Together, we are making progress and improving lives for patients and families, and yet we still have much more to accomplish as a community. As I continue my battle with ALS, I am committed to strengthening our advocacy to accelerate the search for a cure so that my daughters can live in a world where this disease is treatable and curable.”
