About Anne D Pham

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So far Anne D Pham has created 73 blog entries.

Bridging Voice

2023-01-24T14:22:16+00:00

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 [...]

Bridging Voice2023-01-24T14:22:16+00:00

Matt’s Place Foundation

2023-01-24T14:18:23+00:00

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 [...]

Matt’s Place Foundation2023-01-24T14:18:23+00:00

ALS Ride For Life

2023-02-02T16:58:27+00:00

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 [...]

ALS Ride For Life2023-02-02T16:58:27+00:00

Team Gleason Mobility for All

2023-01-24T14:05:12+00:00

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 [...]

Team Gleason Mobility for All2023-01-24T14:05:12+00:00

ALSFAC We Care 2021 Grants

2023-01-10T13:41:21+00:00

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 [...]

ALSFAC We Care 2021 Grants2023-01-10T13:41:21+00:00

ALS Finding a Cure Call for Proposals in Early Diagnostics

2022-12-24T00:13:58+00:00

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 Call for Proposals in Early Diagnostics2022-12-24T00:13:58+00:00

ALS Finding a Cure Providing the Initial Funding for Amylyx

2022-10-03T00:59:42+00:00

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 [...]

ALS Finding a Cure Providing the Initial Funding for Amylyx2022-10-03T00:59:42+00:00

Publications related to Answer ALS, a project ALS FAC helped fund

2022-09-28T00:26:41+00:00

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 [...]

Publications related to Answer ALS, a project ALS FAC helped fund2022-09-28T00:26:41+00:00

Independent FDA Advisory Panel Recommends Approving ALS Drug

2022-09-13T18:04:22+00:00

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...

Independent FDA Advisory Panel Recommends Approving ALS Drug2022-09-13T18:04:22+00:00

Healey & AMG Center, ALS Finding a Cure® and FightMND announce the 2022 ALS Scholars in Therapeutics Recipients

2022-08-25T12:23:38+00:00

Class of 2022 Boston—The Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital (MGH), ALS Finding a Cure® and FightMND selected three recipients for their global two-year ALS Scholars in Therapeutics program. The program received an outstanding pool of global applications from 4 countries. This year’s selected recipients listed alphabetically are Dylan Galloway, PhD of the Washington University School of Medicine, Jacob Mann, PhD of Northwestern University Feinberg School of Medicine, and Roberta Piovesana, PhD of the University of Montreal. Dylan Galloway, PhD Dylan Galloway, PhD is recognized for his research in identifying microRNAs as novel regulators of [...]

Healey & AMG Center, ALS Finding a Cure® and FightMND announce the 2022 ALS Scholars in Therapeutics Recipients2022-08-25T12:23:38+00:00
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