The ALS Association Furthers Commitment to Develop Technologies to Help People with ALS Live Better

The ALS Association is excited to announce $1.4 million in grants to help develop technology that will enhance the quality of life for people living with ALS. The funding supports research in fields ranging from assistive communications and noninvasive ventilation to wearable sensors and a brain-computer interface. 

The grants are part of the Association’s Managing ALS Research Program, which funds research for improving clinical, psychological, and social management of ALS, focusing on both people living with ALS and their caregivers. This includes research in developing assistive technology, measuring patient/caretaker burden, and improving quality of life

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A Deeper Look into ALS Association Efforts to Speed Approval of Gene Therapies

By Neil Thakur, Ph.D.
Executive Vice President, Mission Strategy, The ALS Association

We are getting enthusiastic feedback and questions about our partnership with Project ALS to fund a clinical research project for jacifusen, an experimental therapy being developed at Columbia University’s Eleanor and Lou Gehrig ALS Center for FUS-associated ALS. We thought it would be helpful to describe the strategy underlying the project. 

Jacifusen is an experimental treatment based on antisense technology, a way to silence genes. Jacifusen has not received FDA approval, and we do not know if it works. It is a variation of the same gene silencing approach being tested in more common ALS genes, specifically SOD1 and C9orf72. 

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The ALS Association and Project ALS to Fund Columbia University Drug Trial for Patients with Rare Genetic Forms of ALS

The ALS Association and Project ALS announced a joint two-year, $900,000 commitment to pilot a clinical research program for an investigational gene therapy for mutant FUS-associated ALS, at Columbia University’s Eleanor and Lou Gehrig ALS Center. This is the first step in developing a comprehensive strategy to treat multiple rare ALS genes. 

“We want to develop simple pathways to treatments for all forms of genetic ALS including rare types,” said Neil Thakur, PhD, executive vice president, mission strategy at The ALS Association. 

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ALS Focus Launches and Seeks Participants for Important Ongoing Survey Program

Today, The ALS Association launched the ALS Focus survey program. The goal is to recruit people living with ALS and their caregivers to capture their experiences and preferences. Data will be collected in a scientifically rigorous way through quarterly surveys. ALS Focus will provide a deep and evolving understanding of disease burden and experiences of people with ALS and their caregivers. 

The program is a stakeholder driven and collaborative program run by people with ALS, caregivers, academics, industry, government, and ALS Association leadership. Together, they  will ensure a unified and truly representative “voice” for the ALS community. This information is critical to ensure that the voice of people living with the disease directly informs research, clinical, regulatory, and drug company decisions.

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In the Past Year, The ALS Association Has Committed $21.5 million to 70 Promising Research Initiatives

The tallies are in for The ALS Association’s research program for the 2020 fiscal year, showing a total commitment of $21.5 million dollars in 70 promising research initiatives around the world. 

“We hope that these strategic commitments in funding for research projects and infrastructure development will speed breakthroughs and accelerate drug development for ALS,” said Dr. Kuldip Dave, vice president of research at The ALS Association.  

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The ALS Association invests $3 million in first ever ALS platform trial to speed up clinical trial process

This week The ALS Association launched a major initiative, investing $3 million ($1 million per year over three years) in the first ever ALS Platform Trial. The trial will take place at the Sean M. Healey & AMG Center for ALS at Mass General in collaboration with the Barrow Neurological Institute and the Northeast ALS Consortium (NEALS).

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2019 Highlights in the Fight Against ALS

As 2019 winds down, we look back on some of the important progress made this year in the fight to change the future of ALS. With the hard work and help from so many across the ALS community, the ALS Association was able to make great strides in our key mission areas, bringing us one step closer to our vision of a world without ALS.

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