AFTD is joining fellow nonprofits, biopharmaceutical companies, and the U.S. Food and Drug Administration (FDA) as partners in the Accelerating Medicines Partnership for ALS (AMP ALS) initiative. AFTD’s participation in the initiative was made possible thanks to the support of David and Weezie Reese.

The 2011 discovery that mutations of the gene c9orf72 can cause both FTD and ALS transformed the characterization of the disorders. It is now generally understood by researchers that FTD and ALS exist on a spectrum, with it possible for both disorders to coincide in the same person. As the sole FTD-focused partner of AMP ALS, AFTD has joined to help bridge the silos of FTD and ALS clinical research, to ensure that the needs of people jointly affected by FTD and ALS are considered in the initiative, and to bring the world closer a future without FTD and ALS.

The AMP ALS initiative was launched by the Foundation for NIH (FNIH) in partnership with 16 organizations spanning federal agencies, non-profits, and biopharmaceutical companies. Its goal is to accelerate the discovery of new biomarkers and targets for interventions for ALS. As part of that broader goal, AMP ALS will also streamline the collection and management of ALS clinical research data across the United States, making deidentified data readily available through an online knowledge portal.

By making data accessible to researchers, AMP ALS can accelerate the pace of research and foster greater collaboration between experts of different disciplines, including between FTD and ALS scientists. An ALS database also creates the opportunity for scientists to conduct big-data analytics to gain insights on different aspects of ALS and FTD on a national scale.

The initiative recognizes the importance of lived experience in neurodegenerative disease research and promotes the involvement of persons with lived experiences of ALS, including ALS-FTD. Persons with lived experience and advocates will serve in working groups alongside staff from NIH, FNIH, FDA, and C-Path.

As an AMP ALS Steering Committee member, AFTD will have the opportunity to highlight the connection between FTD and ALS. In addition to appointing FTD experts to subcommittees responsible for project design, AFTD will work to ensure that projects focused on c9orf72 genetic mutations incorporate input from FTD experts, as people with the mutation are at equal risk of developing ALS or FTD. AFTD will also help ensure that AMP ALS is informed by the lived experiences of people diagnosed with FTD-ALS, their care partners, and family members.