Lou Gehrig Day — EverythingALS, a nonprofit dedicated to accelerating research, technology, and patient access for amyotrophic lateral sclerosis (ALS), and Vision 2030 are partnering with the Allen Institute to accelerate research into ALS disease progression and to identify new targets that could form the basis for novel medicines to treat the disease. This ALS-focused research will be supported by EverythingALS and Vision 2030’s $1M initial investment in the newly launched Allen Institute’s Brain Health Accelerator. The Allen Institute has committed $200M to the Brain Health Accelerator, a research initiative to study neurodegenerative diseases.
In addition, EverythingALS and Vision 2030 are leading a fundraising campaign to provide further support for the Allen Institute’s ALS research targeting contributions from individuals, corporations, and other organizations. As part of this campaign, additional contributions have been committed by the nonprofits the ALS Network and The Head Cook for ALS toward the Allen Institute’s ALS-focused research initiative. Altogether, the amount raised in this fundraising campaign will be effectively multiplied up to 5:1 by the Allen Institute’s infrastructural and ALS-related allocations, making it one of the most heavily leveraged philanthropic commitments in ALS research history.
“Eighty-five years ago today, ALS claimed the life of baseball legend Lou Gehrig, whose unforgettable ‘Luckiest Man on the Face of the Earth’ speech turned personal tragedy into one of the most inspiring moments in sports history. Tragically, despite nearly nine decades of scientific progress, the prognosis for ALS patients remains largely unchanged: two to five years to live, no cure, and far too few resources devoted to ending the disease. Today, we are taking a meaningful step toward changing that reality,” said Bill Nuti, founder of Vision 2030 and Chair of EverythingALS.
“The Allen Institute’s Brain Health Accelerator is committing to redefine an ALS diagnosis, and as one of the national leaders in ALS clinical research, citizen-driven science, and fundraising, it is an honor to help accelerate those efforts with this investment,” said Indu Navar, founder of EverythingALS. “EverythingALS is also leading the ALS nonprofit fundraising community to support the acceleration of the Allen Institute’s research into ALS disease progression. The contributions by ALS Network and The Head Cook for ALS are major indications that the community recognizes the transformational potential of the research being done. We call on the community to continue donating to this critical research that will impact the lives of people living with ALS and their families.”
ALS will be the first new disease studied under the Allen Institute’s Brain Health Accelerator, an initiative announced today.
“The Brain Health Accelerator builds on our foundational work in Alzheimer’s and is the proof point for our broader initiative in neurodegenerative diseases,” said Ed Lein, Executive Vice President and Director of Brain Health. “We’re excited to partner with EverythingALS to accelerate this work.”
“EverythingALS’s leadership is redefining how patients, science, data, and philanthropy converge,” said Rui Costa, CEO of the Allen Institute. “EverythingALS provides a fulcrum for leveraging the resources and funding required to accelerate the Allen’s commitment to this research initiative.”
“Transformational progress in ALS will require unprecedented collaboration, investment, and scientific coordination,” said Sheri Strahl, President and CEO of the ALS Network. “We are proud to join EverythingALS, Vision 2030, and the Allen Institute in supporting ambitious research efforts designed to accelerate discovery and bring new solutions to people living with ALS and their families.”
“The Allen Institute is known for ground-breaking insights into brain cells and circuits,” said Mike Fitzgerald of The Head Cook for ALS. “They are in a unique position to use that knowledge to accelerate the development of new treatments, and we’re proud to join with EverythingALS and other organizations to accelerate this research.”
“For far too long, ALS has written the ending. This is the generation that rewrites it — but only if we move with the urgency the disease never gives its patients. Every dollar accelerates the science, shortens the wait, and brings a cure within reach,” continued Nuti.
Join the movement. Invest in the cure. Give at V2030.org.
About EverythingALS
EverythingALS has been dedicated to advancing ALS 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 7,000 subscribers, 1,400 research participants, and over 300,000 visitors to its YouTube channel from over 60 countries. Furthermore, EverythingALS collaborates with neurologists and scientists from Harvard, MGH, Temple University, MIT and a consortium of 22 pharmaceutical companies, sharing research findings and insights through its unique citizen-driven research with an open innovation model to bring cures. 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. http://www.everythingals.org
About Vision 2030
Vision 2030 is the result of the merger between EverythingALS and Cure ALS—two foundations united by a common purpose. The mission of Vision 2030 is to accelerate the development of a cure for ALS by connecting researchers with the necessary data, technology, and partnerships to halt disease progression and promote nerve regeneration, restoring muscle strength and functionality for those affected. For more information, visit: https://v2030.org/.
About ALS Network
The ALS Network partners with the ALS community to drive the global discovery of prevention strategies, treatments, and cures for ALS; provide access to quality care and connection; and promote initiatives to improve health outcomes. The ALS Network serves people with ALS and their families throughout California, Hawaii, and far beyond. For more information about ALS and the ALS Network, visit alsnetwork.org or email info@alsnetwork.org. You can find the ALS Network on social media at @yourALSnetwork.
About The Head Cook for ALS
HeadCook for ALS was created in honor of Cathy Fitzgerald, the original Head Cook and the inspiration behind our mission. Cathy, a dedicated wife, mother and grandmother, passed away after living courageously with ALS for thirteen years. HeadCook is a 501(c)(3) non-profit that raises funds and directs these resources to support ALS research, patient care, and policy advocacy.
About the Allen Institute
Allen Institute is a 501(c)(3) nonprofit medical research organization dedicated to accelerating science for a healthier world. Through large-scale, multidisciplinary research initiatives, the Institute generates foundational knowledge, data, tools, and models that are shared openly with the world to advance our understanding of life and health. Founded by Jody Allen and the late Paul G. Allen, Allen Institute is supported primarily by the Fund for Science and Technology.
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