ALS Association

ALS Association
ALS Association · Public domain · source
Name	ALS Association
Headquarters	Washington, D.C.
Leader	Calaneet Balas

ALS Association is a non-profit organization dedicated to the fight against Amyotrophic Lateral Sclerosis (ALS), a progressive neurodegenerative disease that affects Nancy Frates, Stephen Hawking, and Lou Gehrig, among many others. The organization works closely with Centers for Disease Control and Prevention, National Institutes of Health, and Food and Drug Administration to advance research and improve patient care. With the support of Michael J. Fox Foundation, Muscular Dystrophy Association, and Christopher and Dana Reeve Foundation, the ALS Association has become a leading voice in the ALS community, advocating for patients and families affected by the disease, including Augie Nieto and Jason Becker. The organization's efforts have been recognized by American Medical Association, National Academy of Sciences, and Institute of Medicine.

● History

The ALS Association was founded in 1985 by a group of patients, families, and caregivers, including Milton Safenowitz and Jennifer Estess, who were determined to make a difference in the fight against ALS. The organization's early years were marked by collaboration with ALS Therapy Development Institute, Packard Center for ALS Research at Johns Hopkins, and Robert Packard Center for ALS Research at Johns Hopkins University. As the organization grew, it established partnerships with Biogen, Cytokinetics, and GlaxoSmithKline to accelerate the development of new treatments and therapies. The ALS Association has also worked closely with Congressional ALS Caucus, National Organization for Rare Disorders, and Rare Diseases Clinical Research Network to raise awareness and advocate for policy changes that benefit ALS patients, such as Orphan Drug Act and 21st Century Cures Act.

● Mission_and_Objectives

The ALS Association's mission is to discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by the disease, including Steve Gleason and O.J. Brigance. The organization's objectives include funding research, providing patient care and services, and promoting awareness and education about ALS, in collaboration with ALS Ice Bucket Challenge, Amanda Bernier, and Pete Frates. The ALS Association works with American Academy of Neurology, American Neurological Association, and International Alliance of ALS/MND Associations to advance the understanding of ALS and to develop effective treatments. The organization's efforts are guided by a commitment to Patient-Centered Outcomes Research Institute and National Institute of Neurological Disorders and Stroke.

● Research_and_Programs

The ALS Association funds research grants and fellowships to scientists and clinicians at institutions such as Harvard University, Stanford University, and University of California, San Francisco, including researchers like Diane McKenna-Yasek and Robert H. Brown Jr.. The organization's research program focuses on understanding the causes of ALS, developing new treatments, and improving patient care, in partnership with ALSUntangled, Answer ALS, and NEALS Consortium. The ALS Association also supports clinical trials and studies, such as EMPOWER Study and HEALEY ALS Platform Trial, and collaborates with FDA, NIH, and CDC to accelerate the development of new therapies. Additionally, the organization provides funding for ALS clinics and certified treatment centers of excellence, such as Massachusetts General Hospital and University of Pennsylvania Health System.

● Fundraising_and_Awareness

The ALS Association raises funds through events such as the ALS Walks, ALS Rides, and ALS Golf Classics, which are supported by PGA Tour, LPGA, and NFL Players Association. The organization also receives funding from corporate sponsors like Biogen, Cytokinetics, and GlaxoSmithKline, as well as from foundation grants and individual donations. The ALS Association has launched awareness campaigns, including ALS Awareness Month and World ALS Day, to educate the public about ALS and to promote research and advocacy, in collaboration with Social Media Ambassadors like Amanda Bernier and Pete Frates. The organization has also partnered with celebrity ambassadors like Julianne Moore, Renée Zellweger, and Drew Brees to raise awareness and funds for ALS research.

● Organization_and_Leadership

The ALS Association is led by a Board of Trustees that includes Calaneet Balas, Lawrence M. Brooks, and Richard S. Bedlack. The organization has a staff of over 100 employees, including research scientists, patient care coordinators, and advocacy specialists. The ALS Association is headquartered in Washington, D.C. and has chapters and support groups across the United States, including ALS Association Golden West Chapter and ALS Association Greater New York Chapter. The organization is a member of National Health Council and Voluntary Health Leadership Conference.

● Impact_and_Achievements

The ALS Association has made significant contributions to the fight against ALS, including funding research that has led to the development of Riluzole and Edaravone, two FDA-approved treatments for ALS. The organization has also advocated for policy changes, such as the ALS Registry Act and Veterans' Benefits Improvement Act, which have improved access to care and benefits for ALS patients, including veterans like Steve Gleason. The ALS Association has received awards and recognition from National Organization for Rare Disorders, Rare Disease Legislative Advocates, and Healthcare Leadership Council for its efforts to advance research, care, and advocacy for ALS patients, including Augie Nieto and Jason Becker. The organization's work has been featured in media outlets like The New York Times, Washington Post, and CNN, and has been supported by influencers like Mark Zuckerberg and Priscilla Chan. Category:Neurological disorders