Jay Curtis’ ALS Journey Through Poetry

Today, we welcome guest blogger Jay Curtis who shares his ALS experiences through poetry.

By: Jay Curtis, New York

I have been a proud member of the Writers Guild of America for decades. I spent most of my professional career as a promo writer/producer/director at CBS Television City in Hollywood. I also write poetry as a creative outlet. I write right-handed. In 2015, I was having trouble with my fingers curling up and with weakness in my right hand and arm. On December 1, 2015, I was diagnosed with ALS.

I decided to document my ALS journey in the series of poems and those poems are now a book titled, In and Out Dreaming, recently published by Lexingford Publishing LLC. It is available at amazon.com, barnesannoble.com and directly from the publisher.

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The National ALS Biorepository Launched – “Learn How to Participate”

By: Our Colleagues at ATSDR

One of the questions that people living with ALS often ask is – what can I do to help ALS research? People with ALS can do that, with a personal contribution to the National ALS Registry (Registry) – in the newly launched National ALS Biorepository (Biorepository).

The Agency for Toxic Substances and Disease Registry (ATSDR) launched the National ALS Biorepository as a part of the Registry in January 2017. This launch came after a pilot study that showed it was feasible to include a biorepository. The Biorepository is collecting biological samples from persons with ALS. It’s different from other biorepositories because it does not limit who can take part to a specific area, study, or clinic. This means that participants’ samples may help researchers everywhere work toward better understanding the causes of, and possible treatments for ALS.

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New Research Brings Help, Hope to People With ALS

ALS is a devastating disease with no cure.

But researchers are working to change that. The increased awareness and donations provided by events like the ALS Ice Bucket Challenge—and by people like you—are making a real difference in the pace of discoveries, bringing us ever closer to the end of ALS.

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This is an Exciting Time in ALS Research

At the largest-ever Drug Company Working Group meeting held in Boston in April, The ALS Association featured the first details of exciting new “antisense” target that may be relevant to most people with ALS, not just those with an inherited ALS gene. The meeting also featured reports from several companies that are forging ahead with novel approaches to ALS treatment. In addition, the meeting was the forum for the formal awarding of the Prize4Life $1 million Avi Kremer ALS Treatment Prize. Much of the work presented are direct results stemming from funding and academic-industry partnerships initiated by The ALS Association.

“With these many new treatments in development, this is an exciting time in ALS research” -Barb Newhouse, President and CEO of The ALS Association.

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Aquinnah Pharmaceuticals Partners with Two Major Pharmaceutical Companies Aimed at Moving Promising Compounds Forward

The biotechnology company, Aquinnah Pharmaceuticals is dedicated to identifying new therapeutic agents for ALS and Alzheimer’s disease, based on a new scientific approach of RNA binding proteins involved in neurodegenerative disease. Last week, Aquinnah announced a $10 million investment from two world leader pharmaceutical companies Pfizer, Inc. and AbbVie Inc. to support therapeutic development to treat ALS, Alzheimer’s disease and other neurodegenerative diseases. This adds to a previous $5 million investment by Takeda Pharmaceuticals in December 2015. The Association recently awarded Aquinnah two grants totaling approximately $500,000 (see below) under the Lawrence and Isabel Barnett Drug Development Program, designed to propel therapeutic targets into human clinical trials through building and fostering academic-industry partnerships.

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ALS Research Progress Showcased at 2017 AAN Conference

This year that the 69th Annual American Academy of Neurology Meeting in Boston, thousands of neuroscientists came together to share their research and collaborate. Here we report the latest ALS research findings presented at the meeting by distinguished researchers, who were chosen to speak based on scientific merit. Read more for exciting ALS updates from the meeting.


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Make a Difference This May

May is ALS Awareness Month!

Awareness is critical to our goal of ending ALS forever. The more people know about ALS, the more they get involved, and the more they support ALS advocacy and research. Through that support, we’ve made great strides toward finding potential treatments for ALS.

But we need your help to spread the word and keep the momentum going! It’s people like you who make everything we do possible. Here are a few ways you can take part in ALS Awareness Month:

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