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 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).
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.
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.
A coalition of patient, clinician, and provider groups – including the ALS Association, the American Association for Respiratory Care (AARC), the National Association for Medical Direction of Respiratory Care (NAMDRC), American Association for Homecare (AAHC), and the Council for Respiratory Care (CQRC) – today commend Representatives Morgan Griffith (R-VA) and Peter Welch (D-VT) for introducing legislation to protect Medicare beneficiaries’ access to critical home ventilation therapy. The Safeguarding Medicare Access to Respiratory Therapy (SMART) Act of 2019 would delay the inclusion of ventilators from the Medicare durable medical equipment competitive bidding program for five years, and establish a technical expert panel (TEP) to update that national coverage policies for home mechanical ventilator devices so that they reflect technological advancements and peer-reviewed science.
Richard will always be Dad, Papa, Dick, Your Honor and the patriarch of the family. Somehow I was blessed with the most amazing man as my Father. He taught me the importance of family, love, respect, and commitment.
The ALS Association announced today that Ventec Life Systems is the newest corporate sponsor to commit to helping people with ALS and their caregivers to live their lives to the fullest. Ventec Life Systems has committed to the development and launch of comprehensive respiratory care educational resources to help people living with ALS and their caregivers make informed decisions about their health.
Permobil, the world’s leading manufacturer of power wheelchairs, and the Permobil Foundation have once again joined forces with The ALS Association as a national-level partner to offer support and enhance the quality of life for people living with ALS.
Quantum Rehab, a leading manufacturer of complex rehab power wheelchairs, recently renewed its role as a national partner with The ALS Association, marking the company’s seventeenth year fighting with the Association to make sure people with ALS can live their lives to the fullest. ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within five years of diagnosis. For unknown reasons, veterans are twice as likely to develop ALS as the general population. There is no cure.
An independent research organization reported that donations from the 2014 ALS Ice Bucket Challenge enabled The ALS Association to increase its annual funding for research around the world by 187 percent. During this time, ALS researchers made scientific advances, care for people living with ALS expanded and investment in disease research from the federal government grew.
Cytokinetics, Incorporated (Nasdaq:CYTK) and The ALS Association today announced the continuation of their partnership in the fight against ALS. Cytokinetics is renewing its Gold Level Sponsorship of the National Walks to Defeat ALS® and Premier Level National ALS Advocacy Conference Sponsorship as well as Platinum Level Sponsorship for initiatives led by The ALS Association Golden West Chapter, including grant funding for care services for people with ALS in the Bay Area.
The ALS Association is pleased to announce the continuation of its national collaboration with Mitsubishi Tanabe Pharma America, Inc. (MTPA), which has resulted in significant support of the Walk to Defeat ALS program, various national conferences and events, and an extensive care grant distributed to The ALS Association chapter network.
The ALS Association, the only national nonprofit fighting amyotrophic lateral sclerosis (ALS) on every front, applauded the Food and Drug Administration’s (FDA) announcement today that it has approved Radicava (edaravone), the first new treatment approved specifically for ALS in 22 years. The FDA approved Radicava less than a year after Mitsubishi Tanabe Pharma Corporation submitted a New Drug Application. There are only two other approved treatments specifically for ALS, Riluzole and Tiglutik.