Guest Post: I’m a Fighter, But I Don’t Fight Alone

By Steve Ziegler

Note: In recognition of National ALS Awareness Month, The ALS Association is sharing many new stories about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, powerful fundraisers, and the researchers fighting for a cure.

I’m proud to be the third person profiled in this series, and I’m happy to be able to tell you my story and why I continue to fight.

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David McClain: ‘There is ALWAYS Hope’

In recognition of ALS Awareness Month, we’re sharing many new stories about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, the powerful fundraisers and participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the second profile in that series.

Also, The ALS Association just launched three new public service announcements (PSAs) highlighting what life is like with ALS, and we’ll be promoting them throughout this month to show “The Reality of ALS.” Each PSA focuses on a person living with ALS, including David McClain, who is featured in “A Few Words.” (Watch it here.)

David is originally from Rockwall, Texas, and is now on what he calls “an extended stay in New Haven, Connecticut.” He has lived with ALS for more than 15 years.

Until ALS robbed him of his career, he spent 25 years working in sales for a steel company. He and his wife, Donna, met 33 years ago and were engaged after dating two weeks.

Continue reading David McClain: ‘There is ALWAYS Hope’

Guest Post: How People With ALS Have Changed My Life

By Michelle Reynolds Gray

In recognition of ALS Awareness Month, we’ll be sharing many new stories about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, the powerful fundraisers and participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure.

This is the first profile in that series, and it’s written in the volunteer’s own words. Michelle Reynolds Gray has been volunteering to help people with ALS in the St. Louis, Mo., area for more than six years.

I met my first person with ALS in early 2012, a 59-year-old man named John. When we met, he was “locked in” and couldn’t respond to me in any way except with tears.

I visited him regularly until he passed away in July of that year. His sweet mother was with him constantly, and she was the first person to educate me about this devastating disease. I remember her telling me that John understood everything I said.

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Youth Raise ALS Awareness with Iced Tea Challenge

Young people across the country are embodying the “Raise Your Voice” spirit for ALS Awareness Month through the Iced Tea Challenge to support The ALS Association.

Yesterday, Iced Tea Challenge campaign organizer Rebecca Wetzel appeared on the “TODAY” show to discuss how youth can be more involved in philanthropy and raising awareness for ALS.

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ALS Association-Funded Researchers Raise Their Voices to Discuss Latest Findings as Part of ALS Awareness Month

Researchers around the world working together for treatments and a cure for ALS are a main reason why we’re on the verge of changing the nature of the disease forever. As part of National ALS Awareness Month, we sat down with two ALS researchers at Johns Hopkins University in Baltimore who are funded by The ALS Association.

Dr. Ke Zhang, a postdoctoral fellow who was awarded a Milton Safenowitz Postdoctoral Fellowship in 2014 and another, Dr. Thomas Lloyd, associate professor of neurology and neuroscience, who we have supported for many years and currently fund.

ALS is a complex disorder with numerous molecular and cellular pathways involved in disease. All the underlying mechanisms of these pathways and how they could potentially connect and interact are still under intense investigation.

Together, with their colleagues, Drs. Zhang and Lloyd recently published an important paper in the prestigious journal Cell that links together two fundamental cellular pathways – nucleocytoplasmic transport and stress granule assembly – in ALS disease, moving them closer than ever to discovering new therapies for ALS.

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Update on Neuroscience in the Clinic: Antisense Oligonucleotide (ASO) Therapy

The 70th Annual American Academy of Neurology meeting, held in Los Angeles last week, provided an opportunity to check in on antisense therapies and the continued dividends from The ALS Association’s early investment in the technology.

Antisense oligonucleotide therapies are designed to prevent the production of disease proteins, saving the body of toxicity. Despite initial skepticism about the concept, The ALS Association took the lead in developing antisense therapies in 2004. As we learned in Los Angeles, that decision has contributed significantly to the progress made in the fight against ALS.

In December 2016, the Food and Drug Administration approved the first ever antisense drug, Spinraza. Spinraza targets spinal muscular atrophy (SMA), a common neuromuscular disease, which is the leading cause of genetic death in infants and toddlers. This is the first approved treatment for this disorder. This success provides hope for the future of antisense therapies targeting ALS.

Currently, there are more than 20 antisense drugs in preclinical stages or in clinical trials. This includes an ongoing trial to test antisense oligonucleotides that target SOD1, the second most common cause of ALS. That trial is currently in phase I/II. Also, work is being done to prepare the upcoming C9orf72 antisense clinical trial, slated to start in the near future (see more below). The C9orf72 mutation is the most common mutation associated with inherited ALS.

During the American Academy of Neurology Meeting in Los Angeles, experts from multiple neurodegenerative diseases came together to give an overview of ASO therapy past and present. Here is a short summary of the antisense technology presentations.

Continue reading Update on Neuroscience in the Clinic: Antisense Oligonucleotide (ASO) Therapy

The ALS Association Kicks Off ALS Awareness Month

We’re excited to kick off National ALS Awareness Month. The next 31 days will be dedicated to education about the disease and the work happening around the world to find a cure, and to advocating for people with ALS and their caregivers.

This year, we’re asking you to Raise Your Voice to elevate the fight against ALS.

As Simon Fitzmaurice, who lost his nine-year battle against ALS in 2017, wrote in his memoir, “It’s Not Dark Yet”: “Communication is key with ALS because the disease takes away your ability to speak. But it need not take your voice.”

Continue reading The ALS Association Kicks Off ALS Awareness Month