ALS Finding a Cure and The ALS Association Partner to Reduce Time to Initial ALS Diagnosis Organizations Commit $2M towards New International ALS Diagnostics Effort Boston, MA., Washington, D.C., and Palm Beach, FL (August 16, 2023) — ALS Finding a Cure® (ALSFAC) and The ALS Association have awarded seven new grants worth a total of $2 million to support the development of early diagnostics for ALS. More than 150 years after the disease was first defined, there are currently no universally accepted diagnostic approaches for ALS. In order to receive an ALS diagnosis, patients must first undergo a battery [...]
About Anne D PhamThis author has not yet filled in any details.
So far Anne D Pham has created 74 blog entries.
Bridging Voice Bridging Voice is a non-profit that provides communication technology support to people with ALS at all stages. To date our team has supported over 1,500 pALS in 49 states and 12 countries. We strive to provide innovative solutions, continued communication, improved quality of life, and hope to the larger ALS community. Funding from ALSFAC will enable Bridging Voice to expand programs that give people with ALS (pALS) the ability to continue to communicate with their family, friends and caregivers. Bridging Voice will provide the education, training and technical support to ensure pALS are always able to communicate [...]
Matt’s Place Foundation Matt’s Place Foundation: “ Hope & Housing ALS Renovation Series” Matt’s Place Foundation(MPF) is a 501(c)(3) charitable organization run 100% by volunteers to assist pALS (People with ALS) and their families, as they navigate learning to live with this disease. Its ultimate intention is to provide hope, housing, and assistance to families dealing with ALS. MPF helps families diagnosed with Amyotrophic Lateral Sclerosis (ALS) by providing grants and support with some of the more expensive costs that are not covered through insurance, such as accessible exterior ramps, accessible bathroom remodeling costs, and rent/mortgage assistance. The foundation [...]
ALS Ride For Life ALS Ride For Life (ALSRFL) is a non-profit located in Stony Brook, New York. ALSRFL was founded 26 years ago by Chris Pendergast. When Chris was diagnosed with ALS he decided he wanted to be part of the solution and ALSRFL was founded. Chris quickly realized patients needed a wheel-chair accessible van to get to much needed doctor appointments and to attend family events. He started lending out his personal van. As the demand grow, ALSRFL started its Mobility Matters Program. This program is the only one of its kind serving Long Island the NYC [...]
Mobility for All Team Gleason has provided over $20 Million in adventure, technology, equipment, and care services to over 30,000 people living with Amyotrophic Lateral Sclerosis (ALS) and countless others through advocacy, support, and, ultimately, bringing an end to the disease. Team Gleason, through its diverse and broad-reaching programming, brings assistive technology, equipment, and robust support services into the hands of ALS patients – with a goal of helping people with ALS not just survive but thrive after a devastating diagnosis. With the support and partnership from the ALS Finding a Cure and the Leonard P. Rizzuto Foundation, Team Gleason will have the [...]
ALSFAC We Care 2021 Grants Click below to learn about our inaugural award recipients: Hark-ALS A Nationwide Network of Compassionate and Financial Resources for Families Living with ALS. Read More Compassionate Care ALS Sustainable Growth for ALS Care in the United States. Read More Massachusetts General Hospital Expanding the ALS Parenting At a Challenging Time (ALS PACT) Program with web-based resources for parents and providers. Read More Penn Medicine Respiratory Care for ALS: The North American ALSFAC We Care Online Cource for Clinicians Read More [...]
ALS Finding a Cure Call for Proposals in Early Diagnostics Shockingly, more than 150 years after the disease was first defined, there are currently no universally accepted diagnostic approaches for ALS. In order to receive an ALS diagnosis patients must first undergo a battery of tests designed to rule out other diagnoses. This is highly problematic because it can take a year for an ALS patient to receive the correct diagnosis (and sometimes even longer). While these individuals are searching for a name for their affliction, they are frequently bounced to multiple doctors, can receive unnecessary (and expensive) surgical procedures and [...]
ALS Finding a Cure Providing the Initial Funding for Amylyx In every journey of discovery, certain days distinguish themselves as fundamental to achieving the ultimate objective. Yesterday was one of those days in the fight against ALS, Lou Gehrig’s Disease, with the FDA’s approval of Amylyx’s new drug, Relyvrio, the first new ALS drug in over five years. ALS (amyotrophic lateral sclerosis) is a devastating disease of the nervous system which robs patients of their muscle control and eventually their ability to breathe on their own. While rare, there is no known cure, and it famously struck down Lou [...]
Publications related to Answer ALS, a project ALS FAC helped fund 1. Baxi, E. G. et al. Answer ALS, a large-scale resource for sporadic and familial ALS combining clinical and multi-omics data from induced pluripotent cell lines. Nat Neurosci 1-12 (2022) doi:10.1038/s41593-021-01006-0. 2. Zhang, S. et al. Genome-wide identification of the genetic basis of amyotrophic lateral sclerosis. Neuron (2022) doi:10.1016/j.neuron.2021.12.019. 3. Gilley, J. et al. Enrichment of SARM1 alleles encoding variants with constitutively hyperactive NADase in patients with ALS and other motor nerve disorders. Medrxiv 2021.06.17.21258268 (2021) doi:10.1101/2021.06.17.21258268. 4. Ramamoorthy, D. et al. Identifying Patterns of ALS Progression from Sparse Longitudinal Data. Medrxiv 2021.05.13.21254848 (2021) doi:10.1101/2021.05.13.21254848. 5. Coyne, A. N. et al. Nuclear accumulation of CHMP7 [...]
A panel of independent advisers to the US Food and Drug Administration voted Wednesday (September 7) to recommend the agency approve a novel therapy to treat amyotrophic lateral sclerosis, otherwise known as Lou Gehrig’s disease. The drug, called AMX0035, had previously been rejected by the same group earlier in the year, but new evidence presented by the company that developed it, Massachusetts-based Amylyx Pharmaceuticals, prompted a surprising reversal that also comes amid an aggressive lobbying campaign by ALS patients and their families. Read More...