Douglas McNeil - Full spotlight article: http://webgw.alsa.org/site/PageServer?pagename=GW_9_2018_12_7_Spotlight_on_Doug_McNeil&AddInterest=3850
Article snapshot: Throughout his life, Doug McNeil has, literally, brought light to thousands of people around the world. Today, he remains a dedicated advocate with an unshakable commitment to create positive change, while living with a diagnosis of ALS. Doug began his career at NASA Ames Research Center as an engineering intern. After graduating from San Jose State University with a Bachelors in Science, he joined Lockheed Missiles and Space, working in the Space Systems Division, supporting programs from Hubble Space Telescope, satellite telephone communications, space remote sensing systems, and other special programs. Later he worked at several other large companies, as well as start-ups specializing in a wide range of cutting-edge technologies and executive consulting. But beyond the scope of his impressive resume, the focus of Doug’s passion is his family. He and his wife Sherri are proud parents to two incredible children- Jessica and Matthew. Together, they enjoyed camping, hiking, and many other outdoor activities.“We have a philosophy in our family,” Doug shared, “to commit ourselves to a purposeful and passionate focus on life.”It is this ideal that led to Doug’s profound involvement in civic activities that include youth coaching, science, technology, engineering, and math (STEM) mentoring, city commissions, community foundations, and several school advisory appointments. In 2012, Doug felt he had truly found his calling when he co-founded, “Lighting for Literacy,” a non-profit humanitarian program promoting education and literacy, with the help of Los Gatos United Methodist Church and Los Gatos Morning Rotary. The program teaches science, sustainability, and community service to local youth in Silicon Valley, while providing a much needed resource to impoverished youth internationally. In 2013, President Barack Obama's "Educate to Innovate" initiative and the White House administration recognized “Lighting for Literacy” as Champions of Change. In June of 2017, after sustaining a concussion from a fall, Doug had to take leave from his work. Shortly afterward, he received the diagnosis of ALS. “Hearing this news about the person who has been your soul mate for forty years is devastating,” Sherri said. By November, he was unable to swallow properly, leading to malnutrition, aspiration, and pneumonia. Doug was rushed to the emergency room just after midnight on January 1, 2018. After a 40-day hospitalization, Doug was faced with the difficult decision and hard reality of permanent incubation and 24 hr care. ”What inspires each of us can provide a model for countless people with ALS. This does not mean that we don't suffer, but we can find meaning through compassion and comfort in helping others,” said Doug. You can join Doug and his family at the Silicon Valley Walk on October 5 at Coyote Point. Register today or make a gift to Team Maverick at SiliconValleyWalktoDefeatALS.org.
Lorene Lee - Full spotlight article: http://webgw.alsa.org/site/PageServer?pagename=GW_12_voiceyourlove_lee
Lorene's Letter snapshot: (She composed this message, using assistive communication technology with a visual-tracking system. Lorene typed the words, one letter at a time, using her eyes.) "In my first attempt to write this letter to you, I had written a few paragraphs on my marriage and life. But later, I got to thinking it sounded just like any other couple, going through the usual everyday problems. The next morning, I was going to change everything. When I got to my device, it was erased. What happened is beyond me. This is a problem I sometimes face with this computer. So I will begin again with what I really want to express. When I was first diagnosed with ALS in 2010, I knew it was going to be serious because of all the different tests I took. So, in a sense, I was prepared for bad news. It was my husband, Tony, that took it so hard. He had lost both his sister and his father earlier that same year, and we were also caring for his 16 year-old niece. It was an unbelievable time in our story. By 2012, I had lost my ability to speak and now rely on a speech-generating device with an eye-tracking system to communicate.I used to say that I am from Venus, and Tony says he isn’t from Mars, he is from Pluto (hahaha)! But after many years of disagreements, misunderstandings, and stupid fights, our bond is stronger than ever. I won’t let ALS come between us. No way! This disease is not for the faint of heart. It’s like we just got past the honeymoon stage and have to start all over, and you are on a roller coaster, with a cliff up ahead. I am one of the “lucky” ones living with ALS, who has surpassed the usual five-year survival rate. ALS is a terrible, awful, deadly disease. Tough, sad, ugly, heartbreaking- yes. A learning experience- YES. I have personally learned big time that hate, despair, loneliness, misunderstanding, and sorrow can be changed by opening your heart through love. Even with acceptance of this illness and all of its challenges, I am STILL learning. With all the challenges of living with ALS, giving my loved ones their due is often fallen by the wayside, especially saying how much deep gratitude and appreciation I feel." You can join Lorene and her family at the Silicon Valley Walk on October 5 at Coyote Point. Register today or make a gift to Lorene's Team at SiliconValleyWalktoDefeatALS.org.