Breakthrough ALS Blog

Follow our journey as we blog about the leading-edge research the ALS Therapy Alliance and its partners is conducting. Meet our campaign spokespeople and learn more about how their families are living with the disease and remaining hopeful that a cure will be found. We welcome your comments and feedback!

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Posted by on in Features

Theory of EverythingMany people have a vague awareness of what ALS is, thanks to the Ice Bucket Challenge, the social media phenomenon that went viral last year. They may think of it as Lou Gehrig's disease, knowing ALS derailed the athlete's professional baseball career. Perhaps they saw the 1942 movie "The Pride of the Yankees," which spotlighted Gehrig's life and career, but didn't fully show the brutality of the disease.

Now, ALS is being spotlighted in mainstream media, including two recent high-profile films, "The Theory of Everything" and "You're Not You," and the new FOX hit television show, "Empire." These new Hollywood offerings are providing a more realistic view of ALS, showing how the debilitating illness impacts people with ALS (PALS) as well as their loved ones.

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empire-castThe new FOX television series, Empire, features a main character that was just diagnosed with ALS, which is the first time a main character has portrayed the disease on a major network show. ALS - and the complications and fallout from an ALS diagnosis - are finally being spotlighted on television, where the disease is pivotal to the story's main plotline.

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Granite Employees Participating in the Ice Bucket ChallengeA wide range of philanthropic organizations compete for corporate donations.  Consider breast cancer charities, which have done an amazing job increasing awareness, fundraising and attracting corporate donors. Over the years, they've secured a breast cancer awareness month (October), a signature color (pink), popular events (including 3-day walks in cities nationwide) and an impressive roster of corporate sponsors (the NFL, Chevrolet, Ace Hardware, etc.). 

Until the summer of 2014, ALS charities relied primarily on grassroots fundraising efforts and local events to increase awareness about - and donations to - the cause.  While ALS organizations had secured some valuable corporate support (including CVSpharmacy), they hadn't experienced the same widespread participation and support that other philanthropic campaigns - such as breast cancer awareness - had achieved.

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iStock 000016975754SmallAs the holidays approach, there are a variety of gift ideas that PALS and their caregivers will appreciate:

Technology:

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2014-10-13-ParentFromTheSamePage

When a family member is diagnosed with ALS, it impacts the whole family. Adults often feel a variety of emotions, including anger, sadness, fear, and confusion. While grown-ups grapple with how life will change for the entire family post-diagnosis, be mindful of the disease's impact on your children.

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