Three days before Christmas 2009, Turner Corbett’s family got the devastating news that his mom, Jennifer, had been diagnosed with ALS. Turner was just 12 years old.
Wanting to make the most of a difficult situation, in 2015, Turner created a benefit event that would raise money for ALS research. After running through some ideas with his friend Alex Doswell, they decided a dodgeball tournament would be the most fun and family friendly.
There are many ways, both big and small, to raise ALS awareness. Some people have used their filmmaking or public speaking talents to craft compelling stories of those living with this disease. From TED talks to award-winning documentaries, these videos inspire, educate, challenge and entertain viewers, while celebrating the lives of people with ALS and the contributions they have made.
Below are a few must see videos and films about ALS that are worth watching and sharing with family and friends.
Although children and teens are very unlikely to develop ALS, that doesn’t mean they aren’t affected by the disease. 85% of people who do have ALS report having children or grandchildren who are directly impacted. Coping with a parent or grandparent’s ALS diagnosis is never easy, but it is especially hard for children, who don’t have the same emotional maturity as their adult counterparts. Becoming a caregiver for someone is a difficult transition to make when you’re used to having that person take care of you. And since it’s unlikely that any of a child’s friends would have experience dealing with ALS, it can leave them feeling alone, with no one to really talk to.
For 361 days of the year, Terlingua, Texas is a ghost town. For the other four days, people pour in from across the world for the Original Terlingua International Championship Chili Cookoff. For the past 50 years, Terlingua has been the home of the world’s largest and most competitive chili cookoff.
What began in 1967 as a gimmick to promote Dallas Morning News journalist Frank X. Tolbert’s book A Bowl of Red has developed into an annual tradition, attracting chili cooks from across the world. The winner of the very first championship cookoff, Wick Fowler, was diagnosed with and passed away from ALS, and over 30 years after its start, the cookoff became a party with a purpose.
When Kristin Sedate’s father was diagnosed with ALS in 2014, she stepped in to serve as one of his primary caregivers. Read her story about their journey through ALS and what your donations meant to their family.
Sha Groves lost her husband Greg to ALS in 2014, but continues to be involved with ALS Texas to help those currently battling this disease. Read her story about their journey with ALS and how Buffalo Wild Wings stepped in to help.
Robert Gregory Groves, better known as “Greg,” was a lovely man. From our first introduction, he seemed very quiet. He loved to observe and was quite the jokester. He started his career at Buffalo Wild Wings in November 2005 as an Assistant General Manager in Rosenberg, Texas. He worked his way up to General Manager and then was eventually promoted to Regional Manager. The company was under huge growth at the time, and he knew he had found his home. He was responsible for opening up several locations in Houston and the surrounding area.
Bonnie Walsh has served the ALS Association of Texas in different roles since March 2003. She currently serves as the Regional Development Manager for the Southwest Region of the state, managing two Walks to Defeat ALS and Battle ALS with Flowers, as well as other development activities. Read her story about her time with the Chapter and how it’s affected her life – both professionally and personally.
David Cabe was diagnosed with ALS in 2015 and is an active participant in the Austin Walk to Defeat ALS as part of his team, Cabe’d Crusaders. Read about what participating in the Walk means for him and his battle with ALS.
As many of you know, I have ALS. This is a devastating disease. By the time I was diagnosed, it had already robbed me of the ability to walk unaided and was relentlessly taking away the ability to use my hands, swallow, speak, and breathe. But just knowing where to turn after my diagnosis was almost as daunting and overwhelming as the disease itself.
Steve Morse has been with the ALS Association of Texas for nine years, serving in various capacities. Read his story about how he got involved, the impact of his work in his life, and his vision for the ALS community in Texas.
I went to school to study psychology and always thought I would be a psychologist. But when I finished my bachelor’s degree, I was ready to be done with school for the time being. I went to work for a brain injury rehab clinic and helped people who had had traumatic brain injuries from strokes, car accidents, or other head trauma. It was the first job that I had where I could apply what I learned in school. After that, I went into the mental health field working for a company that cared for people with bipolar disorder and schizophrenia. Our goal was to keep them out of the psychiatric hospital – to teach them about medication management, how to live in a community with other people, and how to manage their mental health issues.
Guest post by Ernie Worth, a patient with ALS
My name is Ernie Worth. I am a 38-year-old husband, a father of three, and an ALS patient.
For months leading up to my diagnosis last fall, I had been experiencing speech difficulties. For me, this was very strange, as I have always enjoyed giving presentations, public speaking, and the like. It started out subtly, and gradually got worse as time went by. I was also rapidly losing weight, and since I have always been very physically fit and health-conscious, the physical change was quite obvious and disturbing.
