Guest Post: Steven’s Stompers and Bladen County Aim for a Cure for ALS

By Ann Mason, Cousin and Steven’s Stompers Team Member

The story of Steven’s Stompers begins with Steven Davis.

Steven is a lifelong resident of Bladen County, N.C., an avid outdoorsman, a pipe fitter by trade, and an outstanding athlete. He began noticing symptoms in February 2012 and was diagnosed with ALS by a neurologist on April 30, 2012, at age 34.

Six years after his diagnosis, Steven’s physical abilities have been severely limited by the disease’s progression. He is now confined to a wheelchair and depends on assistance for all daily activities.

He moved back into his childhood home so his parents, Kenneth and Gail Davis, and his sister, Sandra Robbins, could be his primary caregivers. (Valuable caregiving support comes from the staff at Lower Cape Fear Hospice.)

In 2013, Sandra initiated Steven’s Stompers in honor of Steven to raise awareness and funds for The ALS Association North Carolina Chapter through the Fayetteville Walk to Defeat ALS. Family and countless others touched by the effects of ALS joined the Steven’s Stompers team.

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Guest Post: Through Triathlons, I Can Make a Difference

By Heather Grahame

One day you find you’re having trouble tying your shoes and buttoning your shirt. After many months, numerous doctor visits, and a battery of tests, you’re told you have ALS.

An ALS diagnosis is unbelievably crushing. The impact is impossible to fully appreciate until it hits you or someone you know. The disease is a monster, and it only has one direction. You progress until you can no longer eat, speak, walk, or breathe. Research into finding a cure is vital. That’s why I run, bike, and swim.

My brother, Tom, was diagnosed with ALS in October 2016. He and his wife, Jan, are responding as positively as possible.
Tom has decided to use his ALS as a means of advancing scientific research. He researched ALS in depth and, with the help of his ALS doctor at Georgetown University, chose to take a drug called Tasigna. The drug was originally developed to treat cancer, but it seems to have slowed his progression and reduced some of his symptoms.

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The Power of Insights…and Kiddie Pools!

Innovation plays a key role in The ALS Association’s fight to develop treatments and a cure for ALS and to empower people living with the disease to live their lives to the fullest. During June and July, we are celebrating some of the key innovations helping us change the nature of ALS forever.

The ALS Association teamed up with a group of expert data analysts at Mastercard who spent more than 24 consecutive hours to help our national office and chapters gather insights into improving operations and strategies to advance our mission to find a cure for ALS.

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Watch “Mr. Connolly Has ALS” Online Now!

“Life is full of challenges,” said Gene Connolly. “We get little say in what happens to us, but everything to say in how we deal with it. In fact, our response will define us.”

The short film, “Mr. Connolly Has ALS,” about a beloved Concord High School (Concord, N.H.) principal’s journey with ALS and his 14th and final year at Concord, had its public television broadcast debut on June 11 and is available to stream online throughout the U.S. until July 11.

Documentary filmmaker, Dan Habib, beautifully captured Gene Connolly’s positive spirit and humor as his disease progressed and he lost the ability to walk and speak. During the film, Gene, an educator for more than 35 years, sits down with some of the 1,600 students he served as principal, to answer their questions and give some final advice.

Continue reading Watch “Mr. Connolly Has ALS” Online Now!

Erin Brady Worsham: Playing Life as it Lies

In recognition of ALS Awareness Month, we’ve been sharing a lot of 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 the participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the 15th profile in that series.

Erin Brady Worsham, an award-winning artist based in Nashville who has lived with ALS for more than 24 years, takes her philosophy about life from golf.

“The cardinal rule in golf is, ‘You gotta play it as it lies,’” she said.

She has created four different art pieces with that theme for an ALS golf tournament.

Diagnosed with ALS in 1994 while attending art school, Erin now creates art by lifting her eyebrows to move a sensor that connects to her forehead and communicates with her computer.

“The themes my art takes on are simply a reflection of my life and the opportunities that come my way, but I like to do a different ‘take’ on whatever I do, especially disability,” she said.

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Sophie Rubin: ‘Saying Something and Doing Something Are So Different’

In recognition of ALS Awareness Month, we’ve been sharing a lot of 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 the participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the 14th profile in that series.

“I raise my voice for the people who can’t. Someone I love was affected by ALS, so it affected me as well. I say what I [feel] the people who lost their communication abilities would want to be said,” 13-year-old Sophie Rubin said.

Sophie is a seventh grader in Maryland. She has an older sister, Lucy, who is 16 years old and a dog named Rosie. She is a competitive dancer and English is her favorite subject. And she loves her grandmother, “Nanny,” very, very much.

Nanny, who Sophie describes as “the best,” passed away in March – 14 months after being diagnosed with ALS. In Nanny’s honor and memory, Sophie has raised more than $10,000 through her “Nanny’s Nation” One Dollar Difference campaign for The ALS Association DC/MD/VA Chapter and said this year’s ALS Awareness Month theme of “Raise Your Voice” sums up her last seven months.

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Guest Post: ‘ALS is What I Have, Not Who I Am’

By Alan Alderman

Note: In recognition of ALS Awareness Month, we’ve been sharing a lot of 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 the participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the thirteenth profile in that series.

Bad things happen to good people every day. That’s just the nature of life. But it doesn’t mean we stop living and loving.

My ALS story officially started on a warm fall afternoon in September 2001. I had been having difficulties with speaking and swallowing for several months. After more than two months of seeing about a dozen different medical professionals, and having more tests than one can imagine, I sat in the small examination room of a local neurologist.

The doctor had just finished an EMG and asked if he could be excused for a minute. What was I to say? No?

He stepped out of the room. I sat alone on the examination table for what seemed like an eternity but was probably only a few minutes.

When he returned, he sat on the small rolling stool and rolled in front of me. He looked me in the eyes, placed his hands on my knees, and said, “Alan, I believe you have ALS.”

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