#USA #Los Angeles #ALS Research #ALS Network #ALS United

Nonprofits Join Forces to Fund ALS Research

In a landmark initiative, nine organizations focused on addressing amyotrophic lateral sclerosis (ALS) have come together with the ALS Network to pioneer a new approach to funding critical research. The collaboration, which also involves ALS United and various local nonprofits, aims to galvanize scientific advancement in a field that has long been stagnant in terms of breakthroughs and solutions for those afflicted with this devastating disease.

The participating organizations encompass a wide geographical range, including ALS United Connecticut, ALS United Greater Chicago, ALS United Greater New York, and others across regions like New Mexico, Nevada, and North Carolina. Collectively, they are dedicated to providing essential services, enhancing research efforts, and advocating for policy changes that benefit those living with ALS.

This partnership is poised to revolutionize ALS research by creating a centralized program that minimizes administrative overhead and maximizes direct funding for innovative investigative projects. Sheri Strahl, the president and CEO of the ALS Network, emphasized the importance of this collaboration: "Our collective efforts not only catalyze groundbreaking research but also ensure that more funds are directed towards solutions rather than administrative costs."

With a strategy focused on leveraging shared resources, this initiative is designed to expedite research projects that showcase enormous potential. Significant support—amounting to hundreds of thousands—has already been pooled to facilitate these efforts, which are underpinned by the ALS Network's Research Innovation Initiative. The goal is to achieve tangible results in a disease category that has seen minimal positive outcomes historically.

Kristen Cocoman, the CEO of ALS United Greater New York, highlighted the strength of their collaboration: "This model emphasizes the collective power of our organizations that have been pioneering ALS research for decades. By combining our local expertise, we create an innovative ecosystem that accelerates progress towards a cure."

To oversee and determine the most promising research initiatives, the ALS Network recruited a Scientific Advisory Committee (SAC) composed of leading researchers and experts in the field. Julie M. Sharpe, president and CEO of ALS United Greater Chicago, praised the committee's ability to swiftly evaluate project proposals, reinforcing the belief that through teamwork, progress towards curing ALS can be achieved.

Looking to the future, the partnership plans to broaden its research funding beginning in 2025 with a public request for proposals, galvanizing even more projects under its aegis. Additionally, a newly established community research committee will engage with individuals affected by ALS to ensure that funded projects are aligned with their needs and concerns. This creates an inclusive atmosphere where voices from the community are integral to the decision-making process.

Dawn Newburg, Executive Director of ALS of Nevada, expressed her support for the initiative's ambitious goals: "Together, our combined efforts can significantly hasten the search for effective treatments for ALS, and ultimately lead to a cure for this perplexing disease."

Jerry Dawson, Executive Director of ALS United, underscored the profound impact of such a unified approach: "When members of our community collaborate on critical research initiatives, they not only enhance local efficacy but also expedite advancements towards treatments and solutions."

ALS, commonly known as Lou Gehrig's Disease, is a life-threatening neurodegenerative condition that progressively robs individuals of motor ability, speech, and other essential functions. Alarmingly, veterans are diagnosed with ALS nearly twice as frequently as the general public—a fact that highlights the urgent need for enhanced research and funding in this area.

Despite the daunting challenges that ALS presents, the collaborative efforts of these ten nonprofits are laying a foundation for hope and change, driving a renewed focus on effective research that could alter the landscape for countless individuals affected by this heartbreaking illness.