ALS CONNECT

A Clinical Trails Primer

First, the obvious: everyone wishes there were more effective ALS treatments found already. Progress is being made, with five new genes discovered and two new treatments in the last five years—we are closer than ever to the possibility of a cure. But, even as we talk about how there have been real, tangible discoveries in ALS research, we cannot yet point to a reliable treatment to dramatically slow progression of the disease, let alone a treatment that stops progression or acts as a cure. It is heartbreaking for people with ALS and their families.

But for people with ALS, there is an active role they can take in fighting the disease: by participating in a clinical trial. For while the search new therapies begins in the laboratory, where ideas for new treatments are tested in cell cultures or test tubes, if a treatment shows enough promise it must eventually be tested on the intended end user, meaning human beings—living, breathing people.

Walk a Crooked Path: Take Care of Yourself

By Saundra Stewart

If I had a dollar for every time I had been told to “take care of yourself”, I might be a rich woman! People were well-meaning. They wanted me to know that they thought of me and understood the weight I was carrying. But I almost laughed out loud! Just when was I supposed to do that? Was God going to allow me some extra hours in the day so I could go to the gym and work out or even sit down in a cozy chair and lose myself in a book for an hour or two? Rather doubtful. So I snickered inwardly, smiled, and sent them on their way.

Don and I had chosen (well, actually, he made the decision and I supported him in it) to not allow the feeding tube or ventilator. He knew what the ultimate end of ALS is, and he chose to fight it his way. I respected that. But it did make caring for him a bit more time consuming. We were blessed to have the Hoyer and the Gantry and multiple other gadgets and helps. It made life easier, but it took more time than I felt like I had some days. I had also trained myself to get up every hour and a half to two hours all night long and turn him, check on him and see if he needed anything. Let me tell you why . . .

The Ice Bucket Challenge—Looking Back to Look Forward

We’ve spent some time here and on social media over the last couple of months looking back at the Ice Bucket Challenge. The occasion, of course, was the fifth anniversary of the Challenge, and the chance to remember and recognize some of the people, companies and organizations who took part in the Challenge and have joined us on the journey to support those with ALS and the quest to find new treatments and, someday, a cure.

But the risk of looking back is that you’ll forget to look forward. So as we move into the next five years since the Ice Bucket Challenge, we wanted to focus on what the dollars contributed by you in our community continue to do to make a difference.

Perspectives from Lead Outreach Volunteer Sarah Diaz

We’d like to introduce you to Sarah Diaz, our new Lead Outreach Volunteer (above left with her mother, brother, sister and father). She will be representing our chapter at community events around the region. We asked Sarah if she’d tell us a little bit her of story and she graciously shared the impact ALS has made on her life and how she hopes to impact the lives of others.

Running and Walking for the Cause—and Pie

First the obvious: You could do worse for a Saturday morning than a scenic run or walk through Kimmswick, Missouri. But that’s not the only reason the quaint, tree-lined streets along the Mississippi River will be busy this Saturday morning. As it has since 2011, a community will gather together in support of and in memory of one of their own. And as in 2011 and every year since, it has continued to help support those with ALS and in the search for new treatments, and a cure.

Walk a Crooked Path: If You’re Going to Talk the Talk, Then Walk the Walk

By Saundra Stewart

Before Don became ill with ALS, he always taught an adult Sunday School class at the church we attended. I, on the other hand, always taught children. Don was such a good teacher, and the members of his class loved him dearly. One Sunday evening, we were just leaving for church when Don told me he wasn’t feeling well. We both played instruments for worship and it created a difficult situation if we weren’t there, but I called the Pastor and told him that Don wasn’t feeling well. During the course of the evening, I became convinced that Don was having a heart attack, and I called 911. Sure enough, he had suffered a heart attack and would be in the hospital several days.

Five Years Later—The Ice Bucket Challenge and YOU!

Let’s not kid ourselves, we can all use help with our memory from time to time. Maybe it’s a prompt like “where did you have it last?” or “Don’t forget Aunt Sally’s birthday is coming up.” Likewise, it can be hard to find the time to sit back and remember “that time when….” We are all busy, and maybe we’ll have time next week, or next month, or after school starts, or after school ends, to look back.

Still, this is one area where social media has been a help. Without that reminder from Facebook or Timehop, you might not remember that time when you took the time to watch the sunset, or won $25 from that scratch-off lottery ticket, or dumped a bucket of ice water over your head.