New ALS research effort aims to speed search for treatments

Several nonprofits are uniting to fund new research aimed at identifying targets for the treatment of amyotrophic lateral sclerosis (ALS).

The new initiative will be led by the Allen Institute, a nonprofit medical research organization, through its Brain Health Accelerator — a research initiative to study neurodegenerative diseases. The Allen Institute has committed $200 million to the Brain Health Accelerator, and ALS will be the first new disease studied as part of the program.

“The Brain Health Accelerator builds on our foundational work in Alzheimer’s and is the proof point for our broader initiative in neurodegenerative diseases,” Ed Lein, executive vice president and director of brain health at the Allen Institute, said in a press release announcing the initiative.

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Initial funding for the ALS project will be supplied by a $1 million initial investment from EverythingALS and Vision 2030. EverythingALS is a nonprofit focused on accelerating ALS research, technology, and patient access, and Vision 2030 was formed through a merger between EverythingALS and Cure ALS.

“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.

Rui Costa, CEO of the Allen Institute, said EverythingALS “provides a fulcrum for leveraging the resources and funding required to accelerate the Allen’s commitment to this research initiative.”

In addition to their initial contribution, EverythingALS and Vision 2030 are leading a fundraising campaign to provide further support for the Allen Institute’s ALS research. Other nonprofits, including the ALS Network and The Head Cook for ALS, have already committed additional contributions. The amount raised through the campaign will be effectively multiplied up to 5:1 by the Allen Institute’s infrastructural and ALS-related allocations.

“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,” Navar said. “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.”

Mike Fitzgerald of The Head Cook for ALS noted that the Allen Institute “is known for ground-breaking insights into brain cells and circuits.”

“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,” Fitzgerald said.

Community groups rally around project

Sheri Strahl, president and CEO of the ALS Network, added that this initiative will support “ambitious research efforts designed to accelerate discovery and bring new solutions to people living with ALS and their families.”

The new initiative was announced on June 2, which is Lou Gehrig Day — an annual event honoring the legacy of the famed baseball player, who died from ALS in 1941.

“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.

“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,” Nuti added.