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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Oregon Chapter Goes the Extra Mile to Give People With ALS a Voice

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.

Have you ever been frustrated by not being able to get your point across?

People living with ALS often face this challenge. But thanks to our care services staff and partners, and assistive technology, people living with ALS can keep communicating, even after they’ve lost their voices.

After noticing that people in more rural areas who were interested in accessing alternative communication strategies weren’t receiving comparable services to those in larger cities, The ALS Association Oregon and SW Washington Chapter expanded its communication support.

The chapter launched a unique partnership with the University of Oregon’s Communication Disorders and Sciences program.

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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.

Continue reading Guest Post: Through Triathlons, I Can Make a Difference

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.

Continue reading The Power of Insights…and Kiddie Pools!

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!

ALS Community Workshop: How to Attend the Live Stream, Ask Questions, and Make Comments

On Thursday, July 12, the ALS community will have the opportunity to meet with representatives from the FDA and the pharmaceutical industry during an ALS Community Workshop in order to discuss the latest FDA guidance document related to ALS drug development.

The Workshop will be streamed live on our ALS Community Workshop webpage, Facebook page, and YouTube channel from 9:00 a.m. EDT to 3:00 p.m. EDT.

Both in-person and online attendees will be able to ask questions and comment. Continue reading for instructions on submitting questions and comments that may be addressed during the Workshop.

If you plan on attending the (online) live stream event, please register here: https://thealsassociation.formstack.com/forms/signup.

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Guest Post: Young Caregivers Received Special Training and Support at National ALS Advocacy Conference

By Dr. Melinda S. Kavanaugh, Associate Professor of Social Work, Helen Bader School of Social Welfare, University of Wisconsin-Milwaukee

“It was nice to connect with other people and it made me feel less alone.” (YCare training participant)

For many children and young adults in families with ALS, this is a common refrain; they feel alone and isolated from their peers, especially if they are involved in caring for their loved ones. These young caregivers often help with care tasks, yet have little training or guidance in how to do the specific tasks.

With this in mind, my colleagues and I conducted a study of youth and families in ALS that was funded by The ALS Association. Over 60 percent of respondents said they had no training, despite being involved in care tasks ranging from bathing and feeding family members, to transferring and using complicated assistive devices.

In addition to the data on whether youth received training, I asked how they knew what to do. Responses ranged from “winging it” to “using common sense.” As evidenced in the introduction quote, not only are youth minimally trained, but they have also little social support from peers.

Continue reading Guest Post: Young Caregivers Received Special Training and Support at National ALS Advocacy Conference