News & Stories
Meet the ALS Network’s Advisory Trustees from Hawaii: Joanne “Cookie” Fujio, Nohea Nakaʻahiki, and Lucy Wedemeyer
Meet Joanne “Cookie” Fujio
Cookie’s involvement with the ALS community started in 2012 when her husband, Gary “Black” Miyashiro was diagnosed with ALS. It was just months before the inaugural Hawaii Walk & Roll to Cure ALS in 2013 where she met Nohea Nakaahiki, and Cookie has since become an integral leader and pillar of commitment in the ALS community. Throughout and after Black’s three-year battle with the disease, Cookie remained committed to the ALS Network’s mission and vision, constantly finding ways to involve her family and community as volunteers at the annual Hawaii Walks.
With tenacity, Cookie empowers others through her boldness and drive to find a cure for ALS, and currently serves as an Advisory Trustee, where she remains dedicated to her work and represents the compassion and love which remains at the core of the ALS community.
“During Women’s History Month’s theme of “Moving Forward Together”, it is my pleasure to recognize the inspirational work and contributions of Nohea Nakaahiki, President & CEO, Sheri Strahl, EVP of Mission Advancement, Cherryl Fluke, and my dear friend Sue Morris, among the many women too numerous to name. Continuing to strengthen research, fundraising, and patient and family support programs, it is my honor to have an ongoing role in the ALS Network.”
– With much aloha and gratitude, Cookie Fujio, Advisory Trustee, ALS Network
Meet Nohea Nakaʻahiki
Nohea first got involved with the ALS Network in 2006 when her husband, Clarence “Bully” Nakaʻahiki was diagnosed with ALS at the UCSF clinic by Dr. Catherine Lomen-Hoerth. When they moved back to Hawaii to be closer to family, they realized that Hawaii did not have the services, resources, and support that families like theirs needed while facing ALS. Bully lost his battle to ALS in 2010. In that same year, Nohea met former ALS Network President & CEO, Fred Fisher, at the Monterey Bay Walk and Roll to Cure ALS, and she began to seek a way to bring the ALS Network’s programs and services to benefit Hawaii’s ALS community.
Motivated to ensure that no one in Hawaii experienced what she did, Nohea, in partnership with the ALS Network and the ALS community in Hawaii, took on the challenge of kickstarting the inaugural Hawaii Walk in 2013; in addition to being a founder of the event, Nohea also serves as an ALS Network Advisory Trustee. This year will be the 13th annual Hawaii Walk, and Nohea continues to inspire others to lead, support, and act on behalf of the ALS community.
“My journey with the ALS Network has been nothing short of remarkable. When Bully was diagnosed, the ALS Network gave us hope that we would have the collective resilience to be stronger together in our shared vision for access to quality and compassionate care in Hawaii. It’s been 15 years since I first met Fred Fisher and Hawaii’s ALS community and services continues to grow through continuous collaborative support, efforts, and leadership that is responsible for keeping the momentum going in Hawaii to ensure services and partnerships continue to happen for years to come.
I believe that when we feel the weakest, the ALS Network feels our heartbeats and brings us together, on a mission so to speak, where we are strengthened by each other, by the ALS Community that we serve, and by and through our ALS Network family. We’re all in it together!”
– Nohea Nakaʻahiki, Advisory Trustee, ALS Network
Meet Lucy Wedemeyer
Following her high-school sweetheart and husband Charlie Wedemeyer’s ALS diagnosis in 1977, Lucy and her family have been committed to their local communities, including Hawaii and Los Gatos, as advocates for those living with ALS. Lucy supported Charlie, a former all American football player, as he continued to coach high school football at Los Gatos High School all throughout his 34-year battle with ALS, bringing his vision and inspiring story to the world through her voice.
Lucy first attended the ALS Network’s 2nd annual Hawaii Walk & Roll to Cure ALS in 2014, and has since become an Advisory Trustee and supporter of both the Hawaii Walk and Bay Area Peninsula Walk. Lucy is a light in the ALS community, serving as a beacon of hope, support, and commitment as she returns year after year for the annual Hawaii and Bay Area Peninsula Walks.
“The ALS Network has been a life saver for me, my family and countless others. In the early days of our family’s journey with this horrific disease, we struggled with no one to turn to for hope. With courageous effort, Charlie stayed deeply involved with our children throughout his battle with ALS. Now, there is hope with the ALS Network. Being able to lean on others touched by ALS at community events, especially at the Walks, gave me the motivation to help others face this debilitating disease as an Advisory Trustee. The ALS Network has created a family, an Ohana, as we don’t just suffer together, but are inspired and encouraged by one another to fight the battle with compassion and love.”
– Lucy Wedemeyer, Advisory Trustee, ALS Network