January 15, 2022
NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKES (NINDS)
EMBARKS ON A STRATEGIC PLAN FOR ALS
 
NINDS has issued an RFI to receive public input as they embark on their first strategic plan for ALS.
 
Please take five minutes to watch a video from the ALS Problem Solvers regarding the RFI --
 
Click here for video.
 
Click here for a one-pager for your consideration as you compose your comments.
 
Click here for the NINDS site with instructions to compose and submit your thoughts.
 
Please comment and ask others to do so. Deadline is February 11.
 

November 8, 2021

NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKES (NINDS)

COMMITS TO FURTHER DISCUSSION TO ADVANCE ALS SCIENCE

 

October 20, 2021 was a momentous day for amyotrophic lateral sclerosis (ALS). A group known as ALS Problem Solvers, met with the director and leaders from the National Institute of Neurological Disorders and Stroke (NINDS), to present “Five Things That Will Change Everything.” The Five Solutions leverage NINDS’s leadership, scientific expertise, and tools to deliver the same advances to ALS that other NIH agencies have successfully implemented to advance oncology and HIV/AIDS science and treatments.
 

Guided by noted HIV/AIDS activist, Gregg Gonsalves, the ALS Problem Solvers presented a compelling case for a new large natural history study to expedite and enrich research, a comprehensive clinical trial network, and a parallel track for ALS therapies with the involvement of people living with the disease.
 

NINDS committed to further discussions with the ALS Problem Solvers around the Five Solutions and offered ongoing access to its leadership. Following the meeting, the ALS Problem Solvers immediately began evaluating ways to leverage existing NIH assets to support the Five Solutions. The group also was invited to participate in the upcoming NINDS strategic planning process for ALS.
 

The ALS Problem Solvers felt that one of the Five Solutions they proposed, to work with NINDS, literally started on October 20. These ongoing discussions may be the historic turning point needed to advance ALS research. When people living with HIV and cancer began working with NIAID and NCI there was tremendous progress. The NINDS team recognizes the value and benefit of having people living with ALS involved in efforts.
 

ALS Problem Solvers are a diverse group of independent people with ALS and caregivers coalesced around a single problem – working with NINDS to leverage their proven experience and expertise to benefit ALS.
 

Progress on research and treatments has been tragically slow in ALS, a complex, rapidly progressing, 100% fatal disease with an average life expectancy of just two to five years following diagnosis. Accelerating the pace of research and allowing access to experimental treatments will give the estimated 30,000 people fighting ALS hope and more time with theirloved ones.
 

ALS Problem Solvers welcomes people with ALS and their caregivers to share their insights via the group’s website. www.ALSProblemSolvers.org. The group will provide updates and solicit information via Twitter at @ALSProbSolvers.

July 4, 2022

Please click here to see our new video, "The Music Stops With ALS."

It's an important two minutes.