This is a personal statement read by Jennifer Bernay on the 2021 virtual hill day held with the ALS Association Northern Ohio Chapter and members of congress representing the state of Ohio.
Following the lack of action by the FDA to expedite approval of AMX0035, an experimental treatment for ALS, The ALS Association today called on the agency to follow its own guidance and move with the urgency of its Canadian and European Union counterparts. Health Canada and the European Medicines Agency (EMA) are working with Amylyx, the company that makes AMX0035, to move the treatment toward approval.
The Board of Trustees of The ALS Association unanimously supports our CEO Calaneet Balas, who has served the global ALS community with distinction, integrity, and compassion.
The ALS Association, Muscular Dystrophy Association (MDA) and ALS Finding a Cure® (ALSFAC), provided an additional $1.1 million in supplementary funding to leading investigators at the Houston Methodist Neurological Institute and Massachusetts General Hospital for promising research into cell therapy that could slow the progression of amyotrophic lateral sclerosis (ALS).
A press release outlining the certification that Holy Cross Health received as The ALS Association Florida Chapter's fifth multidisciplinary ALS clinic recognized as a Certified Treatment Center of Excellence
The ALS Association endorses the strengthened Accelerating Access to Critical Therapies for ALS Act (ACT) for ALS Act (H.R.8662/ S. 4867) as an important step in bringing promising new treatments to people with ALS as quickly as possible. The bill accelerates the fight against ALS by authorizing $100 million for ALS research and creating the first federal entity explicitly charged with developing treatments for neurodegenerative diseases.
Today, in response to the New England Journal of Medicine publication of encouraging clinical trial results showing that Amylyx Pharmaceuticals’ AMX0035 brought statistically significant benefit to people living with ALS, The ALS Association and I AM ALS immediately called on the drug company and the FDA to make the treatment widely available as soon as possible.
Historic changes in telehealth were made in response to COVID-19 that marked a big step forward in the use of digital technology to deliver health care. We need Congress to pass legislation to ensure expanded use of this vital health care tool is permanent. Send a letter to your members of Congress today urging them to support permanent access to telehealth.
The Bitner Plante Initiative which funds the ALS Certified Centers of Excellence across Florida received $800,000 to continue our mission for the 2020-2021 fiscal year.
The ALS Association strongly supports initiatives to enable people with ALS to access promising treatments as soon as possible, including prior to FDA approval. Our primary goal is to facilitate the development of effective treatments and help support delivery to everyone with ALS as soon as possible.
The ALS Association and I AM ALS announced today that the organizations have awarded a combined grant of $500,000 to BrainStorm Cell Therapeutics (NASDAQ: BCLI), a biotechnology company, to support an amyotrophic lateral sclerosis (ALS) biomarker research study. The grant will be used to draw insights from data and samples collected from patients enrolled in BrainStorm’s ongoing phase 3 clinical trial of its NurOwn® treatment, to further understanding of critical biomarkers associated with treatment response for people with ALS.
The ALS Association, in partnership with the American Brain Foundation and the American Academy of Neurology, has awarded the 2020 Sheila Essey Award for ALS research to Guy Rouleau, M.D., Ph.D., director of the Montreal Neurological Institute and Hospital and chair of the Department of Neurology and Neurosurgery at McGill University. The award recognizes significant research contributions in the search for the cause, prevention of and cure for amyotrophic lateral sclerosis (ALS). Since 1996, The ALS Association and the American Academy of Neurology have jointly chosen recipients of the award.
The ALS Association today announced a three-year, $652,543 commitment to support new collaborative initiatives that will encourage therapeutic pipeline development, improve ALS trial efficiency and quality, and enhance the patient experience with trial access, recruitment, and retention efforts. Activities 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).
ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. There is no cure for ALS yet.
The ALS Association announced today that Jinsy Andrews, M.D., Larry Falivena, Ken Menkhaus, Ph.D., Kevin Spinella, Bill Thoet, and Dave Van de Riet have joined its national Board of Trustees. Both Menkhaus and Falivena are living with ALS, while Andrews is a neurologist at Columbia University. Both Spinella and Van de Riet lost their fathers to ALS and Thoet rejoins the Board after previously serving as Chairman.
Cleveland Construction Attorney and Hahn Loeser Partner Andrew J. Natale was honored by The ALS Association at the annual Hero Awards Dinner held in Charlotte, NC on Wednesday, February 19. Andy was one of four recipients selected for the 2020 award.
The ALS Association today announced a $3 million commitment to the first platform trial for ALS, taking 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). A "platform trial" is a clinical trial in which multiple treatments are tested and evaluated simultaneously. The Association’s commitment is $1 million per year for 3 years.
The ALS Association is partnering with, and will be directly investing in, the ALS Investment Fund II to raise $100 million to accelerate investment in ALS research and development. This second venture fund with offices in Boston and Amsterdam, succeeds a fund that started in The Netherlands and raised $25 million in two-and-a-half years to invest in companies with ALS initiatives.