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The ALS Association

  Monthly e-Newsletter of The ALS Association Greater Sacramento Chapter

March 2017


Chapter News & Upcoming Events

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Steve Gleason Enduring Voices Act is Permanent!

The Steve Gleason Enduring Voices Act is now law!

President Trump signed the Bipartisan Budget Act of 2018 (HR 1892), which included the Steve Gleason Enduring Voices Act. The Act will permanently fix the current Centers for Medicare and Medicaid Services (CMS) policy limiting access to Speech Generating Devices (SGD) for people with degenerative diseases.

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Therapeutic MuSK Antibody Stabilizes Nerve-Muscle Synapses in a Mouse Model of ALS

Researchers funded through The ALS Association’s Lawrence and Isabel Barnett Drug Development Program, uncovered a new way to prevent muscle paralysis in an ALS mouse model. Dr. Steven Burden at New York University Medical School and colleagues at Columbia University Medical School used a stimulatory antibody to increase the activity of MuSK, a protein critical for maintaining the connections between muscle and motor neurons.

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Clinical Trial: FORTITUDE-ALS is Now Enrolling

FORTITUDE-ALS is a clinical trial of an investigational oral drug for the treatment of amyotrophic lateral sclerosis (ALS). This clinical trial is now enrolling participants in both the United States and Canada.

FORTITUDE-ALS is designed to evaluate whether CK-2127107 has an effect on participants with amyotrophic lateral sclerosis (ALS) and what kind of side effects may occur in these participants taking CK-2127107.

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Statement on DRAFT FDA Guidance for ALS Drug Development

On February 12, 2018, the FDA announced its DRAFT Amyotrophic Lateral Sclerosis: Developing Drugs for Treatment – Guidance for Industry. The FDA’s DRAFT guidance is informed by the ALS community’s patient-focused guidance, docketed with the FDA in November 2017. More than 100 individuals from throughout the ALS community worked together to develop the guidance, including people with ALS, caregivers, ALS organizations, the world’s leading clinicians and researchers, industry leaders, and representatives from CDC and the NIH.

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The New Tax Law and Charitable Giving

As the dust settles on the passage of the new tax law, you may be wondering how it will affect your charitable giving. Supporters of The ALS Association give for a variety of reasons, but the added benefit for many donors is the ability to take charitable deductions if they itemize deductions on their tax returns.

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The Hollywood Reporter: ‘How Nanci Ryder’s ALS Fight Sparked a Medical Breakthrough’

The Hollywood Reporter recently published a great article about new discoveries toward a cure for ALS, thanks to contributions and support from Nanci Ryder, veteran talent publicist, and her friends and supporters. Nanci has bravely fought ALS since 2014, and has enlisted the support of such stars as Courteney Cox, Don Diamont, and Renee Zellweger.

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Learning Opportunities

Radicava: A Review of Clinical Trial Data and Drug Considerations
Thursday, March 15, 2018
10:00 a.m. EDT

Webinar Details

A Randomized Controlled Trial of Resistance and Endurance Exercise in Amyotrophic Lateral Sclerosis
Tuesday, April 3, 2018
1:00 p.m. EDT

Webinar Details
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The ALS Association Greater Sacramento Chapter
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(916) 979-9265

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