Your life can change in an instant. Carmen Berkley’s life did in 2015. She is one of the 6,000 people diagnosed with ALS each year. In the video below, Carmen shares with us what a visit to an ALS clinic is like for someone living with the disease.
Before diagnosis, Carmen kept busy as a unit secretary on the oncology floor at Barnes-Jewish Hospital in St. Louis and took care of her elderly father. Now, her husband Charles and two daughters, Jamia and Camille, take care of her.
Continue reading A Day in the Life at the ALS Clinic – The Berkley Family
By Stephen Winthrop
If you ever run into me, you’ll notice that I am wearing a button that says, “I have ALS. Ask me about it.” I love this button because of the conversations it creates with people who want to learn more about ALS and my own journey. Now, I’d like to have an important conversation with you.
Continue reading I’m Thankful for People Like You!
Doug Clough is a fearless ALS advocate from Gilbert, Ariz., who has made it his mission to make a huge impact on people living with ALS. Despite his ALS diagnosis in April 2014, he keeps going. He is involved in ALS advocacy in every way possible, from participating in The ALS Association National Advocacy Day to serving on the National ALS Registry task force to becoming a Northeast ALS Consortium (NEALS) Research Ambassador to participating in an ALS clinical trial, and this year being awarded the Iron Horse Award. Today, we are pleased to be joined by Doug who shares his story how he uses his endless energy to live life to its maximum potential.
Continue reading ‘Super Positive’ ALS Advocate Inspires Those Around Him
Diagnosed with ALS in February 2011 with bulbar ALS, Mickey Johnston is a U.S. Air Force Veteran. He lives in Atlanta, Ga. with his wife and caregiver, Debbie. They have been married for 37 years. We are thrilled to share Mickey’s story of how he started the “Shy-Dye Love Ministry” that brightens the lives of people living with ALS all over the world.
Continue reading Air Force Veteran Fighting ALS One “Shy-Dye” Shirt at a Time
Mike Deeley, a United States Navy veteran from Columbia, Pa., proudly served from 1988 to 1992 as an Aviation Electrician Third Class. In December 2016, he was diagnosed with ALS. Today, Mike generously shares his story about how he is determined to make a difference despite his diagnosis.
Now Mike mainly focuses on enjoying life – traveling and spending time with family and friends – while he is still physically able. He married the love of his life, Tima, this past July (see photo above). “She gets lost with all the stories, but is the person that is always beside me,” Mike said.
Continue reading Navy Veteran Dedicated to Making a Difference for People Living with ALS
Larry Tyler from O’Fallon, Missouri, was a loving husband, father, grandfather, devoted friend, coach, and a successful businessman who traveled the world. Larry was diagnosed with ALS in 2014 and passed away just over 18 months later. Despite all the hurdles he faced, Larry managed to keep his sense of humor and faith, while this devastating disease ravaged his body, slowly paralyzing him and eventually robbing him of his life.
Continue reading A Day in the Life at Home with ALS – The Tyler Family
When Thelma “TAG” Martinez was diagnosed with ALS in 2013, she was 65 years old. Her caregiver and husband of 46 years, Henry, quickly became involved in the services provided by their local chapter.
“On day one of this diagnosis, there is no data dump which tells the patient, ‘Okay, here is everything you need to get through the next few years,” Henry said.
Continue reading #WhyWeWalk – To Find our Purpose