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.
A native Californian, Doug was born in Palo Alto in 1959, and was raised in Santa Clara. He married his college sweetheart, Sherri, in 1984 and theirs is a love story for the ages.
“When we met, Doug was 19 and I was 16, and we knew within three months that we would spend the rest of our lives together,” shared Sherri McNeil. “We have always been a team in everything we did and have been there for each other through all the good and the bad. We never went to bed mad or parted without telling each other ‘I love you forever and always.’”
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 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.
“As a parent of two children, the opportunity to coach and mentor young people has been part of our everyday life for twenty plus years,” Doug shared. “Our kids were very active and curious, and their interests ranged from sports, the environment, technology, space, and science.”
“Every year, during spring break, our family would volunteer, building homes for underserved families in Mexico,” said Doug. “Our son personally has contributed to building five homes during his high school years.”
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.
Students build compact, renewable LED lighting systems that provide four hours of light for people living off the power grid, allowing them the opportunity to read and do homework. The systems are shipped worldwide to provide access to light and cell phone charging, brightening the futures of youth.
"I embraced the chance to create a program that would engage local youth through STEM in a way that would allow them to change the world for youth living in other countries,” said Doug.
In 2013, President Barack Obama's "Educate to Innovate" initiative and the White House administration recognized “Lighting for Literacy” as Champions of Change.
The program was also recognized by the Rotary Silicon Valley District 5170 Governor and received the Carl G. Orne award for World Peace and Understanding, as well as commendations from the County Board of Supervisors and multiple cities for inspiring the futures of youth.
"I often refer to a quote from Confucius when working with young people, ‘Tell me and I will forget, show me and I might remember, involve me and I will understand,’" Doug wrote in the Obama White House blog.
Then, in summer of 2016, Doug first noticed some unusual symptoms. He began tripping due to a dropped foot and experienced fasciculations and muscle spasms. But Doug carried on with his life and work.
However, the changes quickly progressed to the point where Doug needed to use a wheelchair to manage his mobility for everyday living.
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 intubation and 24 hr care.
“Fortunately, we were able to have a primary care doctor, two respiratory therapists, a pulmonologist and a cardiologist that were willing to visit Doug at home," Sherri shared. "Unfortunately, the nurses and respiratory therapists must be privately hired, as they are not covered through insurance, resulting in a huge financial drain that many families would not be able to manage. We ourselves will struggle with if Doug is blessed with long-term stability.
"This level of care is the key to his current status - without it, I believe he would have already succumbed to the disease.”
Upon his return home from the hospital, Doug received a personal letter from former President Obama thanking him for his “tireless commitment to driving our nation forward on the path of progress.” Obama went on to say, “Throughout your life, you have demonstrated a steadfast commitment to improving the lives of people in your community and around the world.”
Receiving this letter encouraged Doug to continue pursuing his passion to make a difference, even with the diagnosis of ALS.
”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.
“When we first started Lighting for Literacy, my fellow co-founder, Jesse Salem, was battling renal cancer and told he had a year to live,” Doug recalls.
“Jesse set the example for me that devoting yourself to a worthy cause in order to serve a higher purpose enables one to forget about your disease. The ability to transcend one's challenges during the transformation one faces, can be found in many ways.
"We worked side by side--one with terminal cancer and another with the onset of ALS- for five years. Our shared mission to help others was a productive outlet to look past our personal challenges to serve a greater good.”
Despite the daily challenges he faces, Doug is still focused on giving back. “When I was first diagnosed with ALS, I asked myself how I could help advance research, help other people battle the disease day-to-day, and help my family and others to better cope, “ Doug said in an article for the San Jose Mercury News.
“A few months ago, I connected with a fellow person with ALS. We were able to communicate and become friends. He was about six months behind me in his progression and had many questions. It felt good to be able to provide guidance and information from my personal journey with this disease.”
The family decided to form “Team Maverick” for the 2018 Silicon Valley Walk to Defeat ALS. The team name was derived from Doug’s middle name and long-time nickname after the character “Brett Maverick” in the television show.
Sherri adds, “He also earned it because he has always been a man who doesn’t take the easy way. Doug follows the right path, even when it is the road less travelled and is more difficult. He always does what’s right, even if it’s hard.”
Being a part of the Walk this year held particular poignancy for their family. The location for the event was where Doug had proposed to Sherri and the Walk date was the week of their 34th wedding anniversary. In a touching moment during the Walk’s opening ceremonies, they were presented red roses by Chapter staff and were congratulated by the hundreds of those who were in attendance.
“If I had a crystal ball and knew that I would lose him early, I still would have made my commitment to him for better or worse,” said Sherri. “We have lived an amazingly blessed life together and I am so grateful for each day we have.”
Led by daughter, Jessica, the team had over 100 participants who together raised over $35,000 in support of the mission of The ALS Association Golden West Chapter. “I feel so fortunate to have grown up with two selfless, nurturing parents,’ shared Jessica in the Mercury News article. ‘They have cared for me through the good and the bad, and it is second nature to do the same for them. ALS has thrown a lot of new realities at us and I want to do anything I can to support my dad through this.’”
Doug and Sherri are happy to have their family close by. Their son, Matthew, now 20, is living with them while studying at San Jose State University. Their daughter, Jessica, now age 27, lives close by in Los Gatos with her husband, Erik, and is an elementary school teacher in Saratoga.
“The diagnosis was devastating for all of us,” writes Sherri, “But we are all learning to accept it. We have always had a motto that ‘McNeil’s can do anything.’ We had no idea at the time how that statement would play such an important role in our lives. We remind ourselves of it constantly and together we are battling this disease!”
With the help of loved ones, Sherri is able to stay strong so they can enjoy their time together. “We have an amazing network of family, friends and community who have been there for anything we need and help us rise above the disease.” Sherri continued “This disease has made us all appreciate how precious life is and be thankful, present and there for each other. We have learned to not spend a lot of time thinking about the future—just being thankful for the blessing of today and make each day the best that it can be!”
Doug has progressed to being completely dependant on others for his care. “Today I am on a ventilator, bedridden, but stable,” said Doug, whose only way of communicating is through a computer using his eye gaze device. “I use a hoyer lift to occasionally get into the power wheelchair, which must be controlled by others, as I am no longer able to move my extremities.” “This level of caregiving would be impossible for one person to do alone,” says Sherri, ”Skilled assistance is imperative for the longevity of both the patient’s and caregiver’s health.”
Sherri and Doug are fervent in their advocacy efforts that continued reform to access skilled home care for people with ALS is imperative. “The government and insurance companies need to consider the unique nature of the disease and give additional exceptions to what is covered for this condition to help every person with ALS get the proper home medical care to extend the quality and length of their lives,” Sherri states.
The McNeils are happy to know there is an organization like The ALS Association Golden West Chapter who shares their “Never Give Up” spirit and is dedicated to helping families with the disease and raising awareness and funds on behalf of the ALS community.
Doug shares, “Adversity does not have to define you or stop you from being productive and helping those less fortunate. You can continue to fight the good fight, raise awareness, and change the world for others.”
The ALS Association Golden West Chapter is grateful to the McNeil family for their valiant efforts to raise funds and awareness to support the Chapter’s vision, while continuing to light the way for others navigating the challenges of ALS.