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
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.
Continue reading A Clinical Trails Primer
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 . . .
Continue reading Walk a Crooked Path: Take Care of Yourself
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.
Continue reading The Ice Bucket Challenge—Looking Back to Look Forward
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.
Continue reading Perspectives from Lead Outreach Volunteer Sarah Diaz
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.
Continue reading Running and Walking for the Cause—and Pie
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.
Continue reading Walk a Crooked Path: If You’re Going to Talk the Talk, Then Walk the Walk
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
Continue reading Five Years Later—The Ice Bucket Challenge and YOU!