Merging as EverythingALS, 2 nonprofits seek to better treatment
New union aims to cut out duplication in ALS research, use of funds
With an aim to share expertise and diminish duplicative research and care efforts in amyotrophic lateral sclerosis (ALS), two nonprofits — EverythingALS and CureALS — are combining operations on the EverythingALS platform, with an emphasis on research.
The new single nonprofit also will tackle efforts to find a cure for the related neurodegenerative condition frontotemporal dementia (FTD).
“We firmly believe that the proliferation of non-profit organizations in this field leads to duplication of efforts, wasting precious time, money, and most importantly, lives,” Bill Nuti, CureALS’ founder and CEO and now chairman of the board of directors for Everything ALS, said in a joint press release.
If everyone knew what everyone knows, we would be so much further along in our pursuit of a cure,” Nuti said.
The merger leverages the organizations’ disease knowledge, resources, and strategic plans, and fortifies their commitment to patient care, research, public and private partnerships, data innovation, and the use of artificial intelligence (AI). The goal is to propel innovative, citizen-driven ALS research, the new partners said.
More research needed to advance ‘archaic’ treatment
Going into the merger, EverythingALS was awaiting the results of several ongoing ALS digital biomarker observational studies — including the Speech study and the Radcliff study — with support from open data sharing. Those findings are expected in six to 12 months.
“Today, ALS is diagnosed at the equivalent state of Stage 4 cancer, while our treatment measurements remain archaic,” said Indu Navar, EverythingALS’s founder and CEO.
“We must break down silos and foster collaboration to accelerate progress,” Navar added.
AI already has played a prominent role in each organization’s efforts in ALS and FTD — and that will continue.
“Artificial intelligence is the most consequential technology development in history and is central to both organizations,” Nuti said, adding that “it will significantly contribute to our research and advancements in the field.”
Unified operations on the EverythingALS platform will be guided by the following priorities:
- To fund and support curative research with an emphasis on regeneration and repair of neurons and axons, or nerve fibers, using AI and technology innovations.
- To drive digital biomarker identification and innovation to improve early diagnoses, treatments, and data feedback for curative investigations.
- To enhance data sourcing, acquisition, and innovation to improve analysis and technology utilization.
- To educate, empower, and support ALS patients so they understand their treatment options and make informed decisions.
“These priorities encompass the important strategic themes for the combined entity,” Nuti said.
“They reflect our commitment to advancing research, improving diagnosis and therapies, leveraging data for analysis and technology integration, and ensuring comprehensive support for people living with ALS and FTD,” he said.
Each organization has actively been building an expansive global ecosystem of partners that include industry, academia, and government. Both also have worked toward more research sharing, which fosters collaboration, knowledge sharing, and resource pooling to maximize the impact of ALS research and investigations.
“CureALS is EverythingALS’s vehicle to focus on research to discover a cure, without overlap in approach,” Navar said, adding, “Our synergy is evident, and our powerful strategic alignment will propel us forward in our mission.”
CureALS is EverythingALS’s vehicle to focus on research to discover a cure, without overlap in approach.
Since 2020, EverythingALS has sought to advance research, foster innovation, and support patients and families. The pioneering CureALS has worked to fund groundbreaking research and empower those with ALS.
“By combining our resources, expertise, and strategic plans, EverythingALS is poised to drive revolutionary advancements and positively impact the lives of patients and their families,” the release stated.