The ALS Association’s annual Leadership Conference offer the opportunity for the organization’s Trustees, members of the Board of Representatives and chapter and national staff convene to develop and refine strategies to most effectively fight ALS and achieve the objectives of finding treatments and improving the quality of life for people and families living with ALS. This year, three individuals affiliated with The ALS Association Golden West Chapter were recognized for their personal contributions to the ALS community: Dallas Forshew, RN, BSN, noted educator and research nurse who received the prestigious Lawrence A. Rand Prize for her passionate work to improve the lives of people living with ALS; Jim Barber, Golden West Chapter Advisory Trustee and trailblazer in ALS research, care services and public advocacy; and Nanci Ryder, renowned Hollywood publicist and public awareness champion, who was joined at the conference by her friend, Academy Award-winning actress, Renée Zellweger.
The dedication that Dallas Forshew has to the ALS community is clear in the wide range of activities to which she gives her personal and professional time. As an active member of the Golden West Chapter, Dallas serves on its care services committee and attends many community outreach events, like the chapter’s Walks to Defeat ALS and Napa Valley Ride to Defeat ALS. She works tirelessly to advocate and raise awareness about ALS at local, state, and national levels, and has become well-known throughout the ALS community for her knowledge of the disease and its effects on those facing it. She was one of a panel who testified in support of funding an $18 Million research grant from the California Institute for Regenerative Medicine (CIRM).
Dallas builds deep relationships with families and caregivers facing ALS starting from the first diagnostic meeting and frequently makes home visits to those in need. She spends at least one weekend a month traveling across the state of California to lead support groups, sharing with them the latest information about new research studies and open clinical trials. Her introductory presentation, THE ABC’s OF ALS, has been presented to hundreds of newly diagnosed families at these support groups and has been viewed over 1000 times on the Golden West Chapter’s YouTube channels and at training sessions for ALS Association professionals.
According to Dallas, “the patient’s experience would be diminished without our care… and the family members will remember every kindness for the rest of their lives.”
Dallas is a regular participant in the California ALS Research Summit and has been a key staff member at two ALS Certified Treatment Centers of Excellence: the ALS Treatment and Research Center at UCSF and the Forbes Norris ALS Treatment and Research Center at California Pacific Medical Center. She has also served on the Association’s certification committee for new centers. In her capacity as a clinical trial evaluator and designer, she has advocated for the patient perspective and has helped influence trial design and management in favor of patient issues. Additionally, she was the only nurse member of the American Academy of Neurology’s ALS Practice Parameter Task Force, helping to develop, author, and later update its important guidance document. She has written patient care manuals and has over 50 publications to her name, including many book chapters about ALS.
In nominating her for the Rand Prize, Fred Fisher, President & CEO, The ALS Association Golden West Chapter wrote: “Dallas is loved by those who are facing this disease and admired by all of us who care for people with it.”
A former University of California Santa Barbara football player and Army Captain in Vietnam, Jim Barber had an impressive 30-year career as an attorney prior to his ALS diagnosis. Barber then turned his attention toward the California legislature and was successful in advocating for the passage of two important bills that benefited the fight against ALS. The ALS Standard of Care Bill acknowledged The ALS Association’s Certified Treatment Centers of Excellence® as the gold standard for ALS Care, and the California Tax Check-off Bill gave taxpayers the option to donate all or part of their state income tax refund to ALS research and raised more than $600,000. He worked tirelessly to advocate of ALS research funding beyond the state legislature and, along with Dallas Forshew, offered key testimony to help secure a pivotal $18 million grant for ALS research from CIRM. In addition, Barber’s efforts led to the creation of the California ALS Research Network, which brings together ALS scientists, clinicians, biotech companies, government representatives and ALS organizations to collaborate with the goal of developing effective treatments and, ultimately, finding a cure for ALS. Sadly, Jim lost his battle with ALS on January 10, 2016 and his family has created a tribute page in his memory.
In August 2014, as the ALS Ice Bucket Challenge was creating unprecedented awareness and support for the ALS community, Nanci Ryder, co-founder of BWR Public Relations in Los Angeles and New York, was diagnosed with ALS. With the support of her clients and good friends, including Courteney Cox, Emmy Rossum, and Academy Award-winners Reese Witherspoon and Renee Zellweger, she gathered an impressive group of supporters who captured the attention of both local and national media. With her extensive connections in media and the entertainment industry, Nanci is a champion for raising public awareness about ALS, advancing ALS research and multidisciplinary care. With almost 250 members, “Team Nanci” has raised more than $265,000 for The ALS Association Golden West Chapter’s Los Angeles Walk to Defeat ALS®. You can find out more about Nanci's efforts at www.TeamNanci.org
In addition to honoring these remarkable individuals, the Leadership Conference recognized outstanding 2015 Golden West Chapter events made possible by fantastic volunteers, participants, and staff.