ALS (Amyotrophic Lateral Sclerosis) may have taken alumna Mayuri Saxena’s ’13 ability to walk and speak away, but it hasn’t taken her drive to serve and help others. So when I AM ALS was founded in 2019, with the goal to raise awareness of ALS, connect patients, engage with policymakers, and advance bills like the Accelerating Access to Critical Therapies (ACT) for ALS, Saxena was among the first advocates to join the fight. She raised her voice to change the narrative and share her story as an ALS patient, and worked tirelessly to shine a light on what the bill could mean for people living with the progressive neurodegenerative disease. After an incredible effort, the bill, which passed unanimously in the Senate, was signed into law by President Joe Biden on December 23, 2021.

As President Biden got ready to speak about the bill before the nation, he was joined via Zoom by Saxena, other ALS advocates and their families, and elected officials who helped sponsor the bill. During his speech, the President acknowledged advocates like Saxena by name and spoke of the fearless, courageous, and bold action taken to fight for the bill’s passing. “When I heard President Biden say my name I was surprised, excited, and humbled all at once,” shares Saxena, using assistive eye-tracking technology to communicate her thoughts about the moment via email. “However, neither I nor a handful of people can take all the credit. It took thousands of people calling, emailing, and meeting with every member of the House and the Senate these past 18 months to get the bill passed and on to the President’s desk for his signature.”

Finding Hope
The signing of the Act represents more than just a bill becoming law for 37-year-old Saxena who was diagnosed with ALS five years ago. It offers real, tangible hope for the future. “There is currently no cure for ALS and access to potential treatments is dismal by the time patients are diagnosed, usually well beyond the cutoff timeframe to participate in a clinical trial,” she explains. “ACT for ALS opens the doors and gives patients hope as access to upcoming treatments becomes more attainable.”

According to I AM ALS,  1 out of every 300 people will receive an ALS diagnosis, the disease can strike anyone at any age, and after diagnosis ALS patients have a life expectancy of just two to five years. For Saxena, the bill’s signing came at the apt time, providing a ray of light after some challenging years.

Being Heard
One of the toughest times for Saxena came in 2020, when she had to get a tracheostomy to help her breathe. The procedure would keep her alive but would lead to her losing the use of her vocal cords. Always a fighter, however, she wasn’t going to be rendered silent. Instead, Saxena focused her energy on seeing ACT for ALS come to fruition. She helped with letter-writing campaigns so that anyone across the country could write to their senator or representative and drive home the point that ACT for ALS would save lives. Via Zoom, she connected with elected officials from both sides of the aisle to discuss the bill. Saxena left such an impact, that many would use her story to express to their peers the importance of ACT for ALS, including Congressman Jeff Fortenberry who spoke of Saxena’s journey and the essential role bipartisan support for the bill would play in providing hope to ALS patients.

The work didn’t end there. Saxena constantly met with and brainstormed with ALS advocates and allies; engaged with local and national news outlets to share what living with ALS is like—her brother Mayank often joined her for on-camera interviews; and through her social media savviness, she engaged family, friends, the public, and celebrities like John Stamos, inspiring them to take action and amplify the importance of the bill.

Serving Others
Saxena isn’t just having an impact nationally with the ALS community. She’s helping change the lives of often overlooked populations on the local level as well. Through her monthly “Giving Back Projects” she’s organized food, supply, and clothing drives, assembled teams to feed the homeless, and raised money for worthy causes. “I feel the purpose of life is to leave this world in a better place than when you entered it. True happiness comes when you can serve your community,” says Saxena. “For me, I forget about my struggles when I know I made someone smile. It doesn’t have to be a big gesture. Happiness can come from making someone in need a peanut butter and jelly sandwich.”

Supporting Students
Saxena’s selflessness, love of humanity, and passion for service to others have created ripples of optimism and change throughout the world. And, she’s hoping to inspire generations of John Jay students for years to come. Recently, she began the process of setting up the Mayuri Saxena Scholarship for Aspiring Government Leaders, a scholarship that will help future Master of Public Administration (M.P.A.) graduate students at John Jay. “Public service is my passion and I want to inspire students particularly from underrepresented communities to pursue careers in government,” says Saxena. “My hope for winners of this future scholarship is that they become leaders in their field and inspire the next generation to create a more inclusive government.”

Looking back at the last few years, there’s no denying that a lot has changed for Saxena. There have been challenges, a lot of sadness and loss, but there have also been happy moments. She’s learned more about herself. She’s received an outpouring of love and support. And, she’s put forth so much good into the world. Thinking of our community, she offers some inspiring words of wisdom. “Never underestimate yourself,” she says. “You are never powerless. Your voice matters. If a quadriplegic, non-verbal individual on a ventilator, such as myself, can get her ‘voice’ heard straight up to the President of the United States, you better believe you too can make a difference.”

To learn more about ALS, visit: iamals.org