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.
May is ALS Awareness Month!
Awareness is critical to our goal of ending ALS forever. The more people know about ALS, the more they get involved, and the more they support ALS advocacy and research. Through that support, we’ve made great strides toward finding potential treatments for ALS.
But we need your help to spread the word and keep the momentum going! It’s people like you who make everything we do possible. Here are a few ways you can take part in ALS Awareness Month:
The ALS Association funds the world’s largest ALS research program, working with more than 150 labs around the globe. The ALS Association supports a wide breadth of specific fields of study that are critical to advancing ALS research.
A significant portion of the research funded by the ALS Association is done through the vast network of clinical research and clinical trials. The ALS Association funds a nation-wide network of Certified Treatment Centers of Excellence, which must meet the ALS Association’s clinical care and treatment standards based on the American Academy of Neurology Practice Parameters. In order to achieve this certification, the clinic must participate in ALS-related research and successfully complete a comprehensive site review.
It’s been said that if you want to move forward, you need to first look back – to remember not only where you came from but also where you need to go. As I look back on 2016, I am reminded of areas of great improvement, but I also see many opportunities for growth.
In 2015, the ALS Association of Texas increased its patient reach across Texas by almost 50 percent in one year. In response, we made many strides to grow our programs and services to fulfill our mission in 2016, including adding a new ALS clinic and loaning out the largest amount of equipment we ever have.
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.
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.
Whitney Sadler has organized Max’s Ride for ALS – a motorcycle ride through Texas Hill Country – for the past 10 years in memory of her friend Max. Read their story of friendship throughout Max’s fight with ALS and how Whitney carries on his legacy.
Max R. Harrison served in the Army and was part of the deployment in Desert Storm. He was an honorable, strong, loyal, blued-eyed guy with an incredible sense of humor. His mission began when he found out that he had ALS at just 32. His goal from the first day of diagnosis was to raise awareness of ALS and funding for research and patient services too.