Every August Until a Cure

LeBron James did it. Bill Gates did it. Oprah, Steven Spielberg and President George W. Bush did it. But the majority of people who took the ALS Ice Bucket Challenge in 2014 were not celebrities, just ordinary folks who got caught up in the fun of nominating friends and family on social media to be doused in water and ice for a good cause.  It’s safe to say, however, that there was definitely another reason why the Ice Bucket Challenge gained traction. ALS is a relentless disease that takes away a person’s ability to move, walk, talk, and breathe on their own and keeps them trapped in their body. To watch someone you know go through this is absolutely devastating, and knowing that there is no cure can sometimes make people feel both helpless and hopeless. For the thousands of individuals affected by ALS, this painful reality was fuel for action that inspired a community of people to come together four years ago to create the original ALS Ice Bucket Challenge.

What followed from this largest viral social media movement of all time was not just news feeds packed with ice bucket challenge videos, but real and meaningful impact for people with ALS – and for researchers searching for treatments and a cure.  The effects of the ALS Ice Bucket Challenge continue to be felt in the ALS community.

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The Kimmswick 5k: A Family Honors Their Mother’s Memory

By Jason Ratliff

The Kimmswick 5K is held in memory of Nancy Ratliff, who touched many people’s lives as a daycare teacher and director, Montessori school teacher, dedicated wife and profoundly loving mother, grandmother and friend.

Our family was turned upside down in the summer of 2009 when, at the age of 61, Nancy was diagnosed with ALS.

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A Deeper Level of Understanding

By Heather Burns, MSW, LMSW, ALS Association Care Services Team Manager

I thought I had a good grasp of the psychological impact of ALS, until I temporarily lost the use of my right hand. I am a south paw, but the inability to use both hands in the way I am accustomed to using them in my almost 31 years of life has been proven to be quite the learning experience.

After returning home from the emergency room, to be greeted by a sink full of dishes, is when the reality of my temporary disability set in. I always strive to have the dishes done before I go to bed. It’s a personal goal. I stood there, hunched over the sink in tears, that I wasn’t able to accomplish this task. My significant other came in and assured me he’d take care of them. But that didn’t make me feel better as I slouched off to bed.
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5 Things to Know Before Enrolling in the National ALS Registry

The National ALS Registry is used to collect, manage and analyze data about people with ALS. The more people signed into the Registry, the more information researchers have access to in their work toward a cure, treatment, and prevention. When people with ALS include themselves in the National ALS Registry, they’re including themselves in the national effort to end ALS.

Because the Registry is its own unique research project and requires people with ALS to join the Registry directly, here are five things people with ALS should know before enrolling.

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Fighting in Memory of Grandma Ann

By Molly Cruitt

Earlier this summer, I got married at the church I grew up in, three days after my grandmother’s 78th birthday. My grandmother wasn’t there.

It’s been almost a full decade since my grandma lost her battle with ALS plus dementia, and it’s easy to get lost thinking of all the things she’s missed and the moments that will continue to happen without her present.

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The ALS Association Clinical Programs – Multidisciplinary Team Approach

The ALS Association St. Louis Regional Chapter collaborates with many experienced ALS clinicians across eastern Missouri and central and Southern Illinois to help ensure people living with ALS have access to specialized care. The ALS Association’s Certified Treatment Center of Excellence at Saint Louis University, The ALS Treatment Center at St. Francis Medical Center in Cape Girardeau, the John A. Cochran VA Medical Center, and the Neuromuscular Clinic at Washington University School of Medicine, provide compassionate care in a supportive, family oriented atmosphere. This multidisciplinary care model brings together a team of health care professionals specially trained to address the needs of people living with ALS, allowing them to receive care from each discipline during a single visit. The care team typically includes a neurologist, physical therapist, occupational therapist, respiratory therapist, nurse, dietitian, speech language pathologist, social worker, mental health professional and an ALS Association Chapter liaison, and can provide a dynamic, individualized diagnosis, anticipatory guidance, and care planning. The multidisciplinary clinic staff provides the nexus between the patient, their family and caregivers, and the medical community.

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Josh Rogers: Why I Walk to Defeat ALS

By Josh Rogers, Senior Vice President & Partner, FleishmanHillard

A few weekends ago, I was jogging past Steinberg Rink in Forest Park and I remembered the first Walk to Defeat ALS® that I attended. The Walk started and finished at Steinberg. That was 2005 or 2006, I think.  I participated in two Walks at Steinberg. Then the event shifted to the Forest Park Visitor’s Center. And this year, we’re moving again to the upper Muny parking lot.

Each location to date has served us very well as the event has grown. And I know our new spot will be great too. Forest Park is such a wonderful institution … it’s impossible to go wrong with an event in the park.

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