Community Advisory Board
Our Community Advisory Board, comprising people living with ALS and family caregivers, ensures that community voices inform the priorities and programming of our organization. By bringing lived experience directly into our decision-making, the advisory board empowers individuals and families while strengthening the support we provide. This united effort helps us stay informed, responsive, and deeply connected to the needs of those we serve. In addition to the board, our team is working together to deliver the best care possible and ensure that no one walks this journey alone.
Stephen Fray (New York) Stephen has been involved with ALS since 2014 and has firsthand knowledge of being an ALS Caregiver and being a person living with ALS. Stephen, a Civil Engineer and Senior Construction Project Manager for 43 years, until six months after his November 11th, 2022, familial ALS diagnosis. Upon receiving the genetic test results one month later, identifying Variants of Uncertain Significance in the SETX and SOD1 genes, Stephen joined Phase 4 of the Tofersen (now Qalsody) accelerated, FDA approval process. Stephen was the first ALS patient to receive the FDA-approved Qalsody. Since being diagnosed three years after losing his mother to the disease, Stephen has joined ALS United Greater NY and other ALS groups across the country to advocate on behalf of his fellow PALs, utilizing the results of the Qalsody treatment, to draw attention to the issues based on his time as a caregiver and now as an ALS patient. To stay true to his mantra, “I am going to do what I can do today until I can’t do it anymore, and when tomorrow becomes today, I will continue and do it all over again.”
Lauren Garcia (New Jersey) Lauren is a Pediatric Nurse Practitioner, entrepreneur, wife, and mom to two incredible toddlers. As an only child, she has experienced firsthand the challenges of caregiving for a parent living with ALS, which has become the driving force behind her advocacy. Professionally, Lauren has dedicated her career to caring for children and underserved families through her work at North Hudson Community Action Corporation, while also owning and directing the League of Extraordinary Children, a childcare and preschool center in Hudson County, NJ. She is the founder of Bloom Social Club, a community for women entrepreneurs, and holds the title of Mrs. New Jersey International 2025, where she shares her “Strength to Bloom” platform—centered on service, strength, and support. Lauren is honored to serve on the ALS United Greater NY Community Advisory Board to ensure that the voices of patients and their loved ones are heard, valued, and centered in programming, advocacy, and support services
Ila Gupta (New York) Ila’s husband was diagnosed with ALS in April 2025. As a devoted caregiver and recent empty nester, she has focused her energy on learning about ALS and supporting efforts to slow her husband’s disease progression. Before this, Ila was an active community organizer and volunteer, with more than 25 years of cross-cultural and cross-functional experience as a consultant for Big Four accounting firms and Fortune 500 companies. She has deep expertise in integrating research and development and in leading global teams across the Americas, Europe, and Asia to implement strategic initiatives that drive meaningful business outcomes. Known for her strong communication and leadership skills, Ila hopes to bring her diverse professional and personal experiences to the ALS United Greater New York Community Advisory Board—contributing in any way she can to end ALS
Les Hanna (New Jersey) Les is a retired school principal who devoted a 40-year career to uplifting students, supporting teachers, and building strong partnerships with families. Serving in an urban district with a 97% Hispanic population, she cherished the opportunity to use Spanish language skills to connect deeply with the community, creating bonds that lasted far beyond the classroom. In February 2022, four years into retirement, Les faced a life-changing ALS diagnosis. What began as a moment of shock and uncertainty has become a source of strength and purpose. Refusing to let the disease define the future, she embraced the fight with courage, resilience, and determination, committing to being a warrior for all people living with ALS. As a member of the ALS United Greater New York Community Advisory Board, Les is dedicated to turning a personal challenge into collective hope by raising awareness, advocating for patients and families, and ensuring that no one faces this journey alone.
Dorothy Pao (New Jersey) Dorothy is a Strategic Wealth Management Associate, caregiver, and mom. For the past seven years, she has balanced her career while caring for her partner, Sandy, following his ALS diagnosis, and raising their young daughter. Dorothy often shares her caregiving journey to offer perspective, connection, and encouragement to others navigating similar paths.
Lawrence Modafferi (New York) Lawrence, who was diagnosed with ALS in 2024, was born and raised in Brooklyn, New York. He now resides in Nassau County with his wife, Barbara. Together, they have three children and seven grandchildren. He began his career as a sixth-grade math and history teacher before moving into the media, where he owned and operated a photography and television business. For the next 29 years, he served as a supervisory federal agent, leading investigations into armed robberies, fraud, and financial crimes. After retiring from federal service, he continued his work in financial investigations as an anti–money laundering specialist for several banks and for the Organized Crime Drug Enforcement Task Force (OCDETF).
Terry Persina (New York) Terry spent her career as a forecast manager in the apparel and home textile industry, collaborating with manufacturers and major retailers. Since her ALS diagnosis in 2017, she has focused on what matters most—her husband Ed, children William and Claire, close friends, and her love of baseball. Her journey with ALS has inspired her to advocate for improved care and to help others live their best possible lives with the disease.
Kathleen Ventarola (New York) Kathleen lives with her husband and their dog in Westchester. They have two grown children—a son in Brooklyn and a daughter in Orlando. Both she and her husband are retired; she enjoyed a long career as a registered nurse. She was diagnosed with ALS (bulbar onset) in May 2024, after first experiencing slurred speech in late 2023. In January 2025, she received a feeding tube, and while her speech is no longer easily understood, she remains active and independent with full use of her limbs.