ALS United Greater New York expands annual ALS summit to four days

By AI, Created 10:49 AM UTC, May 20, 2026, /AGP/ – ALS United Greater New York will hold its sixth annual ALS Education and Resource Summit May 12-15, 2026, adding an in-person research plenary and a new partnership with Her ALS Story. The expanded program aims to give people living with ALS, caregivers and families more direct access to research updates, practical guidance and community support.

Why it matters: - The four-day summit is designed to connect ALS patients, families, clinicians and researchers around the latest science and day-to-day care needs. - The addition of an in-person research plenary brings scientists and the ALS community into the same room. - The new Her ALS Story partnership expands the conversation to issues that affect young women living with ALS, including body image, parenting, intimacy and caregiving for a partner.

What happened: - ALS United Greater New York announced its Sixth Annual Education and Resource Summit: Navigating the ALS Journey for May 12-15, 2026. - The summit includes in-person and virtual programming for people living with ALS, caregivers and families across the Greater New York region. - The event opens Tuesday, May 12, with “An Evening of Insight: Advancements in ALS Research” at the New York Genome Center from 6:00 to 8:30 PM. - Experts from The Eleanor and Lou Gehrig ALS Center at Columbia University, Target ALS and the New York Genome Center will present research updates at the opening session. - RSVPs are required for the in-person event. - Wednesday, May 14 programming was built with Her ALS Story, a national network for young women living with ALS founded in April 2021. - Thursday, May 15 and Friday, May 16 sessions continue virtually with expert-led programming.

The details: - The summit’s research plenary focuses on recent developments in ALS research. - Her ALS Story representatives will join ALS United Greater New York staff and guest speakers for intimate, interactive panel discussions. - The Wednesday panels will examine body image, parenting, intimacy and caregiving for a partner. - Virtual sessions on Thursday and Friday will cover Feeding Tubes and Nutrition, Medical Aid in Dying Update, and Caring for Yourself While Caring for Others. - Registration and full event details are available here. - ALS United Greater New York serves more than 1,200 people with ALS and their families in New York City, Long Island, the Lower and Mid-Hudson Valley, Westchester County and northern and central New Jersey. - The organization works with 10 regional ALS clinics and centers. - ALS United Greater New York is part of ALS United, a national network of independent nonprofit organizations. - Her ALS Story says its community grew from 10 women to more than 120 members. - Her ALS Story partners with organizations including I AM ALS, Project ALS and ALS TDI.

Between the lines: - The summit reflects a broader shift toward treating ALS as both a medical and lived-experience issue, not just a clinical one. - The new partnership suggests ALS organizations are trying to reach subgroups within the ALS community with more tailored programming. - The focus on research, caregiving and personal-life topics signals an effort to make the summit useful to people at different stages of the disease.

What’s next: - ALS United Greater New York will host the summit across May 12-16, 2026, with the first two days focused on in-person programming and the final two days online. - Attendees can register now and review the full schedule before the event begins. - The organization says the summit is meant to help participants navigate every stage of the ALS journey.

The bottom line: - ALS United Greater New York is broadening its annual summit to pair research updates with more personal support, signaling a more holistic approach to ALS education and advocacy.