The ALS Association and Teva Grant Two Awards as part of Teva CNS Target Identification Crowdsourcing Challenge

The ALS Association and Teva Pharmaceutical Industries Ltd. (“Teva”) have announced the recipients of the TEVA CNS Target Identification Crowdsourcing Challenge awards for their outstanding proposals to identify novel ALS targets. The two awards will be granted to Dr. Philip Wong, along with Dr. Jonathan C. Grima and Dr. Jeffrey D. Rothstein, all from Johns Hopkins University School of Medicine in Baltimore, Maryland.

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With ALS, Every Day Adds Up

Our Every Drop Adds Up campaign builds on the idea that people coming together for a common goal can make the impossible happen, just as it did four summers ago when the ALS Ice Bucket Challenge soaked the world. Every person helped, research project funded, story shared, discovery made, piece of legislation passed, and auction bid placed – it all adds up!

For people living with ALS and their caregivers and family, every day adds up.

ALS is a journey that begins months, even years, before a diagnosis. Because there’s no definitive test for ALS, doctors must run through a battery of tests, ruling out other potential syndromes, conditions, and diseases before making a diagnosis of ALS.

It’s a journey that, for many people diagnosed with ALS, continues through the five-month waiting period they qualify for Social Security Disability Insurance.

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A Certified Treatment Center of Excellence Spotlight: Crestwood ALS Care Clinic

Our Every Drop Adds Up campaign builds on the idea that people coming together for a common goal can make the impossible happen, just as it did four summers ago when the ALS Ice Bucket Challenge soaked the world. Every person helped, every research project funded, every discovery made, every piece of legislation passed, and every story shared – it all adds up!

Our national network of 62 Certified Treatment Centers of Excellence (CTCEs) provides ALS care and services in a supportive atmosphere, emphasizing hope and quality of life.

CTCEs are multidisciplinary centers that bring together a team of health care processional specially trained to address the needs of people living with ALS, allowing them to receive care from each discipline during a single visit.

The care team typically includes a neurologist, physical therapist, occupational therapist, respiratory therapist, nurse, dietitian, speech-language pathologist, social worker, mental health professional, and liaison from The ALS Association.

Studies show the benefits of attending a multidisciplinary clinic include longer survival, increased quality of life, and improved access to potential therapies. Thanks to donations from the ALS Ice Bucket Challenge, The ALS Association has increased the number of CTCEs, as well as the size of its annual grants to each one.

This is the third in an ongoing series of CTCE spotlights.

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Clinical Trial: Orphazyme to Enroll 231 People with ALS in Phase III Arimoclomol Clinical Trial

The ALS Association Supported Research In Arimoclomol Development

Our Every Drop Adds Up campaign builds on the idea that people coming together for a common goal can make the impossible happen, just as it did four summers ago when the ALS Ice Bucket Challenge soaked the world. Every person helped, research project funded, story shared, discovery made, piece of legislation passed, and auction bid placed – it all adds up!

Biopharmaceutical company Orphazyme A/S launched a phase III clinical trial of arimoclomol, giving a dose to a person with ALS for the first time, the company announced recently. The randomized and placebo-controlled trial will enroll 231 people with ALS in North America and Europe to determine efficacy and safety of the oral drug.

Dr. Michael Benatar, executive director of the Kessenich Family ALS Center at the University of Miami and principal investigator of the study, presented data of the successful phase II clinical trial testing arimoclomol in patients carrying SOD-1 mutations at the International ALS MND Symposium in Dublin in December 2016.

The ALS Association, along with the U.S. Food and Drug Administration’s (FDA) Orphan Products Development Program, provided funding for the trial. The study was not powered to determine therapeutic effect; however, the data demonstrated safety and preliminary evidence for efficacy, which led to this new phase III trial. The open access data was later published in Neurology in January 2018.

“On behalf of the patients struck by this devastating disease, I am delighted to see this Phase III trial up and running. The ALS Association invested in the early clinical trials and are pleased to see this moving forward to a Phase III study and to seeing the potential of arimoclomol unfold.” (Dr. Lucie Bruijn, Chief Scientist, The ALS Association)

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ALS Researcher Living With ALS Continues to Work Toward a Cure

Our Every Drop Adds Up campaign builds on the idea that people coming together for a common goal can make the impossible happen, just as it did four summers ago when the ALS Ice Bucket Challenge soaked the world. Every person helped, research project funded, story shared, discovery made, piece of legislation passed, and auction bid placed – it all adds up!

Dr. Rahul Desikan is incredible. He’s a prominent researcher of neurodegenerative diseases, including ALS, as well as a loyal husband, father, son, and friend. And on February 17, 2017, in a cruel twist of fate, he became a person with ALS.

Dr. Desikan entered the research and medical field at Boston University in Massachusetts, obtaining both his M.D. and Ph.D. He then completed his diagnostic radiology residency at University of California, San Diego (UCSD) before moving on to University of California, San Francisco (UCSF) for his neuroradiology fellowship.

In the fall of 2016, after years of hard work, he was offered an assistant professorship, along with his own research lab, at UCSF.

Continue reading ALS Researcher Living With ALS Continues to Work Toward a Cure

Every Mile Adds Up When You Walk to Defeat ALS

Our Every Drop Adds Up campaign builds on the idea that people coming together for a common goal can make the impossible happen, just as it did four summers ago when the ALS Ice Bucket Challenge soaked the world. Every person helped, research project funded, discovery made, auction bid placed, piece of legislation passed, mile walked, and story shared – it all adds up!

Our fall Walk to Defeat ALS® season is fast approaching! We talked to people – including Renee Zellweger – about why they come together every year to fight back against ALS.

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Every Bid Adds Up: Online ALS Auction Now Open!

Our Every Drop Adds Up campaign builds on the idea that people coming together for a common goal can make the impossible happen, just as it did four summers ago when the ALS Ice Bucket Challenge soaked the world. Every person helped, every research project funded, every discovery made, every auction bid placed, every piece of legislation passed, and every story shared – it all adds up!

The ALS Association is fighting back against ALS, in every corner of the country. And this August, as part of our Every Drop Adds Up campaign, we’ve launched an online ALS Auction, which is now LIVE!

The online auction is your chance to bid on exciting experiences, including a private batting practice session with former Chicago Cubs pitcher, Ryan Dempster; a private meet-and-greet with New York Yankees legend and manager, Aaron Boone; a seven-night stay at the Pineapple Beach Club in Antigua, and much more!

What makes this month-long auction so meaningful is that its reach is virtually unlimited. Like the ALS Ice Bucket Challenge, the ALS Auction is allowing people across the country to come together online to support the ALS community.

Continue reading Every Bid Adds Up: Online ALS Auction Now Open!