The Help & Hope Symposium brought together more than 200 attendees for a truly meaningful and uplifting day centered on ALS research and care. From the moment the doors opened, there was a genuine sense of warmth and connection in the air. Researchers, clinicians, advocates, caregivers, and industry partners gathered not just as professionals, but as a community united by a shared mission: to improve care and move closer to solutions.
The day began with registration, a continental breakfast, and a vibrant vendor expo. It was a welcoming space where conversations flowed easily, ideas were exchanged, and attendees discovered valuable resources to support individuals and families living with ALS while advancing research efforts.
Opening remarks from Tony Heyl and Jeff Kurkjian helped set an encouraging and collaborative tone, reminding everyone of the power of working together across disciplines to create real, lasting impact.
From there, attendees moved into their first breakout sessions. Dr. Irene Rombel shared exciting insights into how AI is shaping the future of genomic medicine manufacturing, making therapies more efficient and accessible. At the same time, Dr. Daniela Zarnescu offered a thoughtful look at how environmental and genetic factors intertwine in ALS, helping deepen understanding of disease risk and progression.
After a refreshing mid-morning break back in the expo hall, everyone reconvened for lunch and the keynote panel, “Strength Through Collaboration.” Featuring voices from The Association for Frontotemporal Degeneration, The Michael J. Fox Foundation for Parkinson’s Research, The Alzheimer’s Association, and ALS United Mid-Atlantic, the discussion highlighted how partnerships across the neurodegenerative disease space are accelerating progress and improving outcomes. The takeaway resonated clearly: meaningful collaboration is at the heart of advancing the field.
The afternoon continued with sessions that both inspired and informed. Dr. Frederick “Eric” Arnold explored new genetic discoveries in ALS and their potential to open doors to future therapies. Meanwhile, “Unmuted – How AI Changes the ALS Conversation” showcased innovative tools that are empowering individuals living with ALS to communicate and connect in powerful new ways.
As the day drew on, the final sessions brought both innovation and humanity into focus. Attendees learned about emerging brain-computer interface technologies shaped by real patient experiences. In a deeply personal and moving moment, Tara McKean shared her father’s journey with ALS, and how it led to the creation of “Tom’s Friends of ALS Bill of Rights,” an effort grounded in dignity, advocacy, and better care for patients.
Throughout the symposium, there was a steady hum of conversation, connection, and shared purpose. Whether during sessions, over meals, or in the expo hall, people came together not just to learn, but to support one another and build something stronger.
As the Help & Hope Symposium came to a close, attendees left feeling energized, connected, and hopeful. While challenges remain, the spirit of collaboration and dedication on display made one thing clear: together, this community is creating meaningful progress, and bringing real hope to everyone affected by ALS.
Videos from the presentations will be available on our YouTube channel: ALSMidatlantic