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With an aim to share expertise and diminish duplicative research and care efforts in <a href="https://alsnewstoday.com/what-is-als/">amyotrophic lateral sclerosis</a> (ALS), two nonprofits — <a href="https://www.everythingals.org/">EverythingALS</a> and <a href="https://www.wewillcureals.com/">CureALS</a> — 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 <a href="https://www.businesswire.com/news/home/20230711610576/en/EverythingALS-and-CureALS-Join-Forces-to-Discover-a-Cure-for-ALS">joint press release</a>.
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&#8217; 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.
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<h3>More research needed to advance &#8216;archaic&#8217; treatment</h3>
Going into the merger, EverythingALS was awaiting the results of several ongoing ALS digital biomarker observational studies — including the <a href="https://alsnewstoday.com/news/speech-study-artificial-intelligence-ai-technology-als-biomarkers/">Speech study</a> and the <a href="https://alsnewstoday.com/news/trial-planned-digital-home-monitoring-als-progression/">Radcliff study</a>  — 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,&#8221; said Indu Navar, EverythingALS’s founder and CEO.
&#8220;We must break down silos and foster collaboration to accelerate progress,” Navar added.
AI already has played a prominent role in each organization&#8217;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:
<ul>
<li>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.</li>
<li>To drive digital biomarker identification and innovation to improve early diagnoses, treatments, and data feedback for curative investigations.</li>
<li>To enhance data sourcing, acquisition, and innovation to improve analysis and technology utilization.</li>
<li>To educate, empower, and support ALS patients so they understand their treatment options and make informed decisions.</li>
</ul>
“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&#8217;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.”
[quote=&#8221;center&#8221;]CureALS is EverythingALS&#8217;s vehicle to focus on research to discover a cure, without overlap in approach.[/quote]
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.

Merging as EverythingALS, 2 nonprofits seek to better treatment

Bill Nuti, the former CEO and chairman of NCR Corporation, is on a mission to eliminate <a href="https://alsnewstoday.com/what-is-als/">amyotrophic lateral sclerosis</a> (ALS).
Nuti, who stepped away from NCR in 2018 after being diagnosed with ALS, has launched CureALS, a nonprofit that will draw on funding, partnerships, data sourcing, and artificial intelligence (AI) to improve research into progressive neurodegenerative disorders such as ALS, <a href="https://alzheimersnewstoday.com/what-is-alzheimers-disease/">Alzheimer&#8217;s disease</a>, and <a href="https://parkinsonsnewstoday.com/what-is-parkinsons-disease/">Parkinson&#8217;s disease</a>.
The goal is to leverage cutting-edge technologies such as AI and quantum computing to overcome obstacles such as industry silos that have hindered scientific progress toward discovering better treatments or cures for the conditions.
&#8220;We are committed to eradicating ALS and other neurodegenerative diseases by leveraging the power of technology, corporate social responsibility, conscious capitalism, and donations from people who care,&#8221; Nuti, who spent his entire career in the technology industry, said in a <a href="https://www.businesswire.com/news/home/20230602005083/en/Groundbreaking-Nonprofit-CureALS-Founded-and-Launched-by-Former-NCR-Chairman-and-CEO-Bill-Nuti-to-Eradicate-ALS">press release</a>. &#8220;Through our partnerships with innovative and generous companies, which we will be announcing soon, we will make a meaningful contribution to this cause and demonstrate our commitment to making a positive impact on humanity.&#8221;
Despite advances over the last decade, traditional methods of therapeutic development remain slow, underfunded, and insufficiently efficacious, according to CureALS.
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<h3>CureALS a &#8216;beacon of hope&#8217;</h3>
To address that, the organization seeks to provide funding to promising scientists as well as access to advanced technologies like AI, which is used increasingly in healthcare and other fields, to accelerate the pace of scientific discovery.
The nonprofit plans to give researchers access to an AI-driven platform, code-named &#8220;Number Four&#8221; for the uniform number of New York Yankees first baseman Lou Gehrig, who died in 1941 from ALS. The disease was once commonly referred to as Lou Gehrig&#8217;s disease and the official launch of CureALS was timed to <a href="https://alsnewstoday.com/news/all-mlb-teams-playing-lou-gehrig-day-june-2/">Lou Gehrig Day</a>, observed annually on June 2 by Major League Baseball.
&#8220;CureALS represents a beacon of hope for individuals and families affected by ALS, offering a path toward a cure and shedding light on the future of medical research,&#8221; said Ed Rapp, a CureALS advisor who retired from Caterpillar and became an ALS advocate after being diagnosed with the disease in 2016. &#8220;Years in industry taught me that great innovation comes from great collaboration. Bill is committed to building an open source, collaborative platform to unravel the mystery that is ALS.&#8221;
Nuti said CureALS is &#8220;driven by the belief&#8221; that sustainable funding and advanced technology will help speed up efforts toward a cure and effective therapies for ALS.
&#8220;We invite the most innovative and gifted companies in the world to join us as corporate sponsors, as well as private foundations and caring people to help eliminate the critical research funding gap and provide technology resources that will propel us towards a cure,&#8221; he said.

Tag: CureALS

Merging as EverythingALS, 2 nonprofits seek to better treatment

Nonprofit CureALS launches to combat ALS, related disorders