I AM ALS coalition aims for neurodegenerative disease unity
Cures Collective is effort by advocates, partners to address unmet needs
Estimates from the World Health Organization suggest 1 in 4 people are likely to be diagnosed with a neurodegenerative condition. By 2040, these diseases may become the second leading cause of death in developed countries. The nonprofit group I AM ALS has launched the Cures Collective, a coalition of advocates and partner organizations, to help address this concern and unmet needs in amyotrophic lateral sclerosis (ALS) and other neurodegenerative diseases.
By focusing on what the conditions have in common, collaborating communities hope to accelerate critical breakthroughs and bring together organizations and advocates committed to ending these debilitating conditions, amplifying their efforts, reducing duplication, and increasing their effectiveness.
So far, more than 32 organizations and advocates in ALS, frontotemporal degeneration (FTD), and Parkinson’s disease, have committed, and representatives from multiple sclerosis, Alzheimer’s disease, and other conditions will soon be able to join as well.
These diseases “are all connected in both science and community power,” Andrea Goodman, CEO of I am ALS, said in a press release. “It is our duty to ensure we are working together, sharing learnings, and building on each other’s successes for quicker results.”
First efforts by Cures Collective
While I AM ALS is the convener, the coalition’s inaugural steering committee includes prominent ALS associations such as Les Turner ALS Foundation, The Hummingbird Fund, and Hop on a Cure, along with the Parkinson’s patient-led organization PD Avengers. Also on the steering committee are advocates Sharon Hall, an FTD care partner, Hop on a Cure board member and treasurer Jenny Fortner, and Jinsy Andrews, MD, a clinical research director specializing in ALS.
Following its launch, a survey was conducted for members to identify programmatic priorities and shared goals. The effort culminated in an inaugural meeting where 23 members convened in person and virtually to prioritize opportunities for collaboration.
The need for increased awareness of neurodegenerative diseases emerged as a key focus area, presenting an opportunity for organizations to mobilize their communities, create more advocacy power, and foster ongoing collaboration.
The steering committee will move forward with a strategic plan that reflects these priorities. Its goal is to enhance understanding of neurodegenerative diseases, expand the movement, and drive progress in treatments and cures.
“We believe that collective action will improve awareness, increase progress, and accelerate treatments and cures for all impacted,” Goodman said.
To support these efforts, the coalition received funding from inaugural sponsors Mitsubishi Tanabe Pharmaceuticals and Corestem Chemon.
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