THE ALS STRATEGIC PLANNING WORKSHOP
Event Recordings
About
The ALS Strategic Planning Workshop is a two-day virtual event open to the public during which working groups of scientists, clinicians, advocates, and people living with ALS will present an overview of highest priorities for research that will lead to the discovery of effective interventions for the diagnosis, treatment, management, prevention, or cure of ALS.
The workshop provides additional opportunity for input, questions, and new ideas from the interested stakeholders and the broader ALS community.
Background
A working group of the NINDS Advisory Council was convened to explore the landscape of ALS research and draft recommendations for a Strategic Plan. This working group is comprised of a Steering Committee and 5 topic-specific working groups. The topics covered include (order does not indicate priority):
- Accelerating research on the biology behind ALS
- Translating fundamental research into potential ALS therapies
- Optimizing ALS clinical research
- Optimizing the Quality of Life of Persons Living with ALS and Caregivers
- Identifying opportunities for collaborations and partnerships
A Steering Committee and topic-based Working Groups comprised of scientists, clinicians, advocates, people living with ALS, and their caregivers used information from a Request for Information, along with their own knowledge of the research landscape, to develop draft priorities for accelerating research on the biology behind ALS, translating fundamental research into potential ALS therapies, optimizing ALS clinical research, improving the quality of life for persons living with ALS through research, and identifying opportunities for collaborations and partnerships. A detailed timeline is listed below with past and upcoming opportunities for public comments on draft priorities.
Timeline of ALS Strategic Plan
AGENDA
A more detailed agenda can be found on the Agenda Page.
Wednesday, October 26th
| 10:00 AM ET | Welcome and Opening Remarks |
| 10:25 AM ET | Opening Remarks |
| 10:40 AM ET | Lived Experience Panel 1 |
| 11:20 AM ET | Accelerating Research on the Biology Behind ALS |
| 12:35 PM ET | Lunch/Break |
| 1:00 PM ET | Translating Fundamental Research into Potential ALS Therapies |
| 2:15 PM ET | Break |
| 2:30 PM ET | Optimizing ALS Clinical Research |
| 3:45 PM ET | Listening to Public Stakeholders |
| 4:45 PM ET | Adjourn |
Thursday, October 27th
| 10:00 AM ET | Welcome, Reflection on First Day, and Preview of Second Day |
| 10:15 AM ET | Lived Experience Panel 2 |
| 11:00 AM ET | Optimizing the Quality of Life of Persons Living with ALS and Caregivers |
| 12:15 PM ET | Lunch/Break |
| 12:45 PM ET | Identifying Opportunities for Collaborations and Partnerships |
| 2:00 PM ET | Break |
| 2:15 PM ET | Listening to Public Stakeholders |
| 3:15 PM ET | Wrap-up and Summary of Key Themes or Potential Changes to Priorities |
| 3:45 PM ET | Adjourn |