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11-Jul-2023

EverythingALS and CureALS Join Forces to Discover a Cure for ALS

Artificial Intelligence, Data Innovation, and Collaboration Highlighted as Keys to Success

NEW YORK--(BUSINESS WIRE)--EverythingALS and CureALS, two prominent organizations dedicated to finding a cure for Amyotrophic Lateral Sclerosis (ALS) and Frontotemporal Dementia (FTD), are thrilled to announce their merger and unified operations on the EverythingALS platform. This groundbreaking collaboration combines the expertise, resources, and strategic plans of both organizations and solidifies our commitment to caring for people with ALS, researcher support, public/private partnership, data innovation and the use of artificial intelligence (AI) technology to drive citizen-driven research with open innovation as the core of the program.



Both EverythingALS and CureALS have identified key areas of alignment that have propelled this unification, based on a common vision, and understanding of the challenges faced in the cure of ALS. This is a system, and our approach encompasses the programs spanning from the care to cure.

Aligned Vision of Research for Cures and Complementarity of Programs

Bill Nuti, Founder and CEO of CureALS and now Chairman of the Board of Directors for Everything ALS, said, "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. If everyone knew what everyone knows, we would be so much further along in our pursuit of a cure."

The strategic alignment between EverythingALS and CureALS is further enhanced by the leadership of Indu Navar, Founder and CEO of EverythingALS and the organization’s established data science and community engagement teams. Together, the organization has launched several simultaneously operated digital biomarker observational studies and intends to have results in the coming 6 to 12 months, with the support of open data sharing and a fast-growing biopharma pre-competitive consortium. "Today, ALS is diagnosed at the equivalent state of Stage 4 cancer, while our treatment measurements remain archaic. We must break down silos and foster collaboration to accelerate progress."

EverythingALS will spearhead the effort in driving research towards discovering a cure. Expressing her confidence in the merger, Indu stated, "CureALS is EverythingALS's vehicle to focus on research to discover a cure, without overlap in approach. Our synergy is evident, and our powerful strategic alignment will propel us forward in our mission."

Synergies and Alignment: Artificial Intelligence, Citizen-Driven Data Collection and Open Data

Both organizations recognize the pivotal role of artificial intelligence (AI) in their collective efforts. Bill added, "Artificial intelligence is the most consequential technology development in history and is central to both organizations. It will significantly contribute to our research and advancements in the field."

The unified operations on the EverythingALS platform will be guided by four fundamental priorities, as outlined by Indu post-merger:

  1. Fund and support curative research with a focus on neuronal and axonal regeneration and repair using AI and technology innovations.
  2. Drive digital biomarker identification and innovation to improve early diagnosis, therapeutics, and data feedback for curative research.
  3. Enhance data sourcing, acquisition, and innovation to improve analysis and technology ingestion.
  4. Educate, empower, and support people living with ALS to understand and pursue their best treatment options and decisions.

"These priorities encompass the important strategic themes for the combined entity," remarked Bill. "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."

The collaboration between EverythingALS and CureALS extends beyond their organizational boundaries. Both organizations are actively engaged in building a large ecosystem of partners, including industry, academia, government, and research institutions globally. This collective effort aims to foster collaboration, knowledge sharing, and resource pooling to maximize the impact on ALS research.

The merger between EverythingALS and CureALS represents a significant leap forward in the pursuit of a cure for ALS and FTD. 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.

For more information about EverythingALS and CureALS, please visit: EverythingALS.org or email at info@everythingALS.org.

About EverythingALS:

Since 2020, EverythingALS has been dedicated to advancing research, fostering innovation, and offering support for individuals and families affected by ALS. EverythingALS is a non-profit 501(c)(3) organization that operates under the Peter Cohen Foundation. EverythingALS has established a well-connected ALS community network comprising 6,000 subscribers, 1,300 research participants, and 300,000 visitors to its YouTube channel from 50 countries. Furthermore, EverythingALS collaborates with a consortium of pharmaceutical companies, sharing research findings and insights through its unique citizen-driven research with an open innovation model. With a strong emphasis on collaboration and data-driven approaches, EverythingALS is committed to accelerating the development of curative therapies for ALS, aiming for a world free from the burdens of ALS.

About CureALS:

CureALS is a pioneering non-profit organization committed to funding groundbreaking research and empowering individuals impacted by ALS. With a strong emphasis on open data sharing and citizen-driven research, CureALS aims to revolutionize the field of ALS research and drive tangible advancements in the quest for a cure.


Contacts

Cassandra Weller
EverythingALS PR Contact
Cassandra@asylumpr.com
855-462-7958

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Last Updated: 11-Jul-2023