Guest Post: Let’s Stand Together and Keep the Momentum Flowing

By Carol Morgan Shaw

Note: 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, dollar raised, piece of legislation passed, mile walked, and auction bid placed – it all adds up!

My dad, Richard (Dick) Eldred Morgan, liked to say that he’d never been sick a day in his life.

He was born in Binghamton, New York, in October 1921, the second son for Edith and Lee. His older brother, James, was able to go to college, but the family budget couldn’t stretch any further, so my dad worked after high school and added his wages to the family kitty.

When World War II began, he enlisted in the Army Air Corps and became a pilot, flying B-24 bombers over the Philippines. During a training break, two hometown families decided to play matchmaker. They introduced my dad to a young lady from Utica, New York, Ruth Hemstrought. It was love at first sight.

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Meet Dr. Don Cleveland: Prominent ALS Researcher Who Pioneered Antisense Technology

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!

By the beginning of 2019, three trials are slated to be underway to help develop antisense therapy for people with ALS, dividends on a bold investment The ALS Association made in 2004, when the technology was new. We sat down with Dr. Don Cleveland, a pioneer in the field, for the second part of our series highlighting antisense technology.

Dr. Cleveland, professor at the University of California, San Diego’s Ludwig Institute for Cancer Research, is a long-time funded ALS researcher. He has been working with The ALS Association since 2004 to develop DNA-based designer drugs to silence ALS genes, called antisense gene silencing or antisense technology.

In 1999, The ALS Association, along with the American Academy of Neurology, awarded Dr. Cleveland with the prestigious Sheila Essey Award for his significant contributions to research. He was recently awarded the $3 million prestigious 2018 Breakthrough Prize in Life Sciences for his numerous accomplishments in neurodegenerative disease research, including establishing antisense therapy in animal models of ALS.

He talked with us to discuss this important gene silencing technology that currently targets inherited ALS genes and could be potentially applied to non-inherited (sporadic) ALS in the future.

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Kids Inspire Us to Fight 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, story shared, discovery made, piece of legislation passed, and dollar raised – it all adds up!

ALS affects everyone in the family – even kids.

In a new video, real families talk about the impact that a loved one having ALS has on young people – how the disease can be scary and confusing for them and how kids can inspire us all to keep fighting. Watch it and share with your friends and family.

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PopSockets and The ALS Association: A Unique Connection

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!

We’ve been telling you how excited we are about PopSockets joining the fight against ALS this summer. The company is donating 10 percent of net proceeds for every PopSockets grip purchased on their website through September 30.

The funds will go directly toward supporting research into treatments and a cure for ALS, plus care services and advocacy for people living with the disease.

What we haven’t shared is the special connection between PopSockets and The ALS Association.

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The ALS Association’s Early Investment in Antisense Technology Is Having a Real Impact

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!

When Dr. Timothy Miller and his colleagues from Washington University in St. Louis published preclinical data in The Journal of Clinical Investigation last month, showing how second-generation antisense drugs were effective in ALS mouse and rat models, it served as a vivid reminder that every research investment and discovery adds up.

Antisense technology, which The ALS Association has supported from the beginning, represents one of the most promising potential treatments for ALS. The goal is to prevent the production of the toxic proteins by preventing them from being created in the first place. Toxic proteins kill motor neurons, the cells that primarily die in ALS, leading to muscle weakness and, eventually, paralysis.

Doing so could slow or stop disease progression in people living with ALS. Specifically, an antisense drug selectively targets and binds to the mutated messenger RNA linked with ALS and prevents toxic proteins from being made.

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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.

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

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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