Doug McNeil’s determination to bring light to those living without it has given the Los Gatos resident strength in his own battle with ALS.

In 2017, five years after co-founding Lighting for Literacy, McNeil was diagnosed with the progressive neurodegenerative disease affecting nerve cells in the brain and the spinal cord. But he still persists in helping students worldwide who are living without electricity.

“ALS hasn’t stopped Doug at all,” says Lighting for Literacy CFO Gary Lord, who’s known McNeil since seventh grade. “He recently took on the task of finding a new supplier for a critical system part, and it wasn’t easy.”

McNeil co-founded Lighting for Literacy (LFL) in 2012 with the late Jesse Salem with the support of Los Gatos Morning Rotary and the Los Gatos United Methodist Church. They invented a simple, renewable lighting source, using a battery, solar panel, charged control circuit and an LED strip that can light a room to the equivalent of a 60-watt bulb. The lights are assembled by local STEM students and have been distributed to more than 20,000 students worldwide.

“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,” McNeil says.

McNeil credits Salem, who had been told he had a year to live when the pair founded their organization, for showing him that devoting yourself to a worthy cause helps you forget about your disease.

“We worked side by side, both battling terminal diseases for five years,” McNeil says. “LFL played a significant role in extending our lives. Our shared mission to help others was a productive outlet to look past our personal challenges to serve a greater good.”

While Lighting for Literacy is an international service organization, McNeil has lent a helping hand locally through youth coaching, STEM mentoring and serving on town commissions, community foundations and several school advisory boards.

In 2013, then-President Barack Obama recognized Lighting for Literacy as a Champion of Change. In a 2019 letter, Obama thanked McNeil for his “tireless commitment to driving our nation forward on the path of progress. Throughout your life, you have demonstrated a steadfast commitment to improving the lives of people in your community and around the world.”

Obama’s words encouraged McNeil to continue to make a difference, even while battling ALS.

“This disease has sharpened my purpose and passion in life,” he says. “I’m not a quitter and am always up for a challenge. I’m blessed with an amazing wife, family, friends and a community who rallied for me when the path forward seemed insurmountable.”

One of those who’s rallied is Pete Taylor, who says of his friend, “There are few, if any, who could be as naturally and attitudinally armed to deal with the devastating illness of ALS better than Doug McNeil.  He is truly a unique man who maintains his focus on joy even in the face of great challenges.”

McNeil’s wife Sherri says she’s grateful for every day she has with her husband.

“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,” she adds. “This disease has made us all appreciate how precious life is and be thankful, present and there for each other.”

McNeil says he intends to be there for others as long as possible.

“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.”

McNeil’s friends are helping fight the good fight with fundraisers to help offset his uninsured home care expenses, which run about $250,000 a year. A GoFundMe account has been set up at https://www.gofundme.com/f/mnyra3-doug-mcneil-fight-against-als/donate.

Additionally, Los Gatos Morning Rotary has set up a tax-deductible fund. Donations can be sent to Los Gatos Morning Rotary Charitable Foundation, Doug McNeil Fund, PO Box 282, Los Gatos, CA 95031.