ALS United Greater New York

SAVE THE DATES: ALS United Greater New York presents our 5th Annual Education & Resources Summit: Navigating the ALS Journey, a free, two-day virtual conference on May 15-16, 2025. This event is open to all, including people living with ALS, caregivers, healthcare professionals, and advocates—offering valuable insights and resources to help navigate the complexities of ALS. The summit will feature expert-led sessions on key topics, including: Respiratory Care & ALS Mental Health & Well-being Clinical Trials Wheelchair Assessments Living with ALS Panel This interactive event provides essential information, fosters community connections, and empowers attendees with knowledge to enhance their ALS journey. Registration details will be available soon. Stay tuned for updates! https://lnkd.in/exep8TRB

ICYMI: Talk Learn Connect – Applying for NY Medicaid. If you missed our latest Talk. Learn. Connect. program on applying for New York Medicaid, you can now watch it on our YouTube channel?https://bit.ly/TLCMedicaid This session provides valuable information for individuals living with ALS and their families navigating the Medicaid application process. ?But that's not all—our channel also features additional video resources on a variety of topics related to living with ALS, from healthcare access to daily living tips and more. Check it out and stay informed:?https://lnkd.in/ez7dSJek

Calling all advocates! Join ALS United Greater New York at the I AM ALS 2025 Community Summit in Washington, D.C. This event brings together ALS community advocates to learn from each other, connect, and mobilize. We hope you will join us for this compelling and inspiring event. Participants are welcome to attend virtually, too! Deadline to Register is April 14, 2025. Join us for a week of action, awareness, and advocacy! ? https://lnkd.in/e8Ag98j7

Hope is more than just an idea—it’s a powerful force that shapes resilience, fosters connection, and drives meaningful change. In this inspiring webinar, Dr. Richard Bedlack from Duke will share insights on the importance of hope and how it can be actively woven into daily practice, personally and professionally. NEALS Consortium Webinar March 26, 3 PM - Register https://lnkd.in/ejKZ6GSk

?? Musicians United for ALS – A Star-Studded Concert Supporting ALS United Greater NY! ?? Join us on April 15, 2025, for an unforgettable night of music at The Concert Hall at SUNY Purchase, as an incredible lineup of artists comes together to support ALS United Greater New York! ?? Performances by: Patty Smyth, Paul Shaffer, Lisa Fischer, and more!* ?? Music direction by: Rob Mathes ?? Hosted by: Vincent Pastore (The Sopranos) Tickets: https://lnkd.in/evpppgnT

ALS United Greater New York along with 29 other neurodegenerative disease organizations, submitted our FY26 funding requests to House and Senate Appropriations Committee members, urging continued support for ALS programs. Our FY26 funding requests include: $80M for ALS Research at Department of Defense for CDMRP - Veterans are twice as likely to develop ALS, yet many promising research projects go unfunded each year. We must invest in life-saving breakthroughs. $100M for ACT for ALS – $75M for NIH’s Expanded Access Program & $25M for public-private partnerships and FDA research grants. Patients can’t wait. $180M for NIH ALS Research – Cuts to ALS research threaten progress. We need increased funding to drive new therapies, biomarkers, and ultimately, a cure. $15M for CDC ALS Research – Expanding the National ALS Registry & Biorepository to better understand risk factors, environmental triggers, and genetic links to ALS. If you would like to learn more about our advocacy sign up here https://lnkd.in/eKjjXieu

March is Social Work Month and they are the heart of our mission, providing compassion, guidance, and unwavering support to those living with ALS and their families. From navigating resources to offering emotional support, they make an immeasurable difference in the lives of those facing this challenging disease. Their dedication ensures that no one in our community walks this journey alone. Join us in celebrating these remarkable professionals—drop a comment to show your appreciation! Visit als-ny.org to learn about our Care Services.

Join us on Wednesday for our next TLC. Contact Chris Dunn for more information and Zoom link at [email protected].

ALS United Greater New York extends a big THANK YOU to all our Team ALS athletes who ran yesterday in the United Airlines NYC Half. Together, the team raised over $40,000, which will go to where it's needed most: vital research, ALS services, and advocacy. Join us in thanking our incredible runners!

Cheer for Team ALS as they take on the 13.1-mile United Airlines NYC Half! These runners have chosen to run and raise money for ALS United Greater New York. ALS United Greater New York will cheer on our runners at 107 East 42nd Street - right outside Grand Central Station - on Sunday, March 16, from 8:30 AM to 11:30 AM. Swing by and remind our runners that Together, We End ALS! Can't make it in person? Support a runner here ? https://lnkd.in/eBDtSCei #TeamALS