This week, many of us will gather with family and friends to
celebrate Thanksgiving. Traditions vary from family-to-family and by region,
but in many if not most cases, we’ll be asked to share what we are thankful for,
and for families facing the challenges of ALS, sometimes being thankful is a
While the choice on how to handle any holiday is entirely up to them, here are some thoughts on how to think about Thanksgiving during challenging times.
Continue reading Being Thankful Through Challenging Times
Among the many confounding facts about ALS is that veterans are twice as likely as the general population to develop ALS. While there is no fairness in this, those who served our country have the right to expect we as a nation will serve them in return. As we honor those who have served on Veterans Day, we wanted to take some time to explore what services veterans with ALS can access, how they can access them, and what they’ll find at the John A. Cochran VA Medical Center ALS Clinic:
Continue reading Serving Those Who Served—Services Available for a Veteran with ALS
Melissa Smith, MSOT,
OTR/L, joined our team as Associate Director of Care Services this September. Before
joining the ALS Association St. Louis Regional Chapter, Melissa spent the last
14 years working at Paraquad, most recently as the Manager of the Health and
Wellness Center. She is an Occupational Therapist and has experience working
with people with a variety of disabilities, including ALS. Here in her own
words she shares her journey as well as what occupational therapy can mean to
people with disabilities and caregivers.
Continue reading Meet Our New Associate Director of Care Services
There is no getting around it, for nearly all people with
ALS shortly after the diagnosis comes the need to address home modifications.
The needed modifications could be minor at first, or the need could be
significant. But in any case the modifications will feel significant because the changes being made will not simply be
made to a house, condo or apartment, but to a home. Modifying a doorway on a house may be a straightforward
tasks, but modifying a doorway on a home could mean removing the pencil marks
and dates that show how tall children or grandchildren were when they were
There will be considerations beyond cost and functionality.
There will be emotional costs as well. After factoring all these in, you can
begin to plan for a home that makes sense for everyone. Modifications can also
make life easier and safer for caregivers and other family members.
Continue reading Home Modifications for ALS—You Don’t Have to Do It Yourself
The world today can seem like day after day of information
overload. And with good reason. Want to find a good place for dinner? Here are
45 positive reviews of that Italian place down the street, but what about those
15 negative ones? Here are 10 reasons eggs are bad for you, and 12 reasons you
should eat them every day. Which streaming service is best for you? Are you
saving enough for retirement?
And we haven’t even touched on making medical decisions. For
people with ALS, there are many well-regarded, well-informed medical
professionals to rely on for advice on traditional treatment options. But for
patients and families seeking information on alternative or “off label”
treatments, it can seem like they are on their own, left to fend for themselves
and to parse what is good information and what is spin. But that is not
entirely true. For those wanting and willing to learn more, there is ALSUntangled.
Continue reading ALSUntangled—Making Sense of Alternative ALS Treatments
The basics of “planned giving” are right there in the name:
It’s a form of charitable giving that’s planned. But the planning part, well,
sometimes it can be hard. After all, taking the time to sit down and think about
the future in any capacity–nonetheless charitable giving–often seems
intimidating. And once you begin to consider the types and forms of planned
gifts, you may find yourself even more lost than when you started.
But when you break down specific options, you might find the
world of planned giving becomes a bit less daunting and you may even be
surprised by the options that are out there. As such we wanted to explore in a
little detail the Charitable Gift Annuity, a form of giving that
has benefits for you and a non-profit of your choice.
Continue reading A Beneficial Way to Give—Charitable Gift Annuity Q&A
The Dali Lama once remarked: “When you talk, you are only
repeating what you already know. But if you listen, you may learn something
new.” In that spirit, the national ALS Association undertook a community survey
in early 2019 to hear from the community about programs and services that
people consider important, reasons why people were not accessing some programs,
major challenges, and issues around medications. In listening to the community
about their realities, the ALS Association is better able to incorporate real
world information in to care services planning activities and to inform
priority setting, program outcomes, and program improvements.
Continue reading Listening to Learn—ALS Association Community Survey Results
High school students often get a bad rap. Sometimes it is
deserved. High school, after all, can be a challenging time. And while figuring
out this period of growth and change, students can and do sometimes make at
best questionable decisions. We can all probably look back at our high school
years and think of one or two (or maybe more) cringe-worthy moments. It is all
part of growing up.
But it would be unfair to not acknowledge that high school
can and do have much to contribute to the greater good. In some cases, their
dedication and energy towards a cause is nothing less than awe-inspiring. We
have been witness to just such dedication and energy here in our local
community in the form of John Burroughs School and the “Extra Hands for ALS”
Continue reading Extra Hands for ALS—John Burroughs Students Honored for Lending a Hand to Make a Difference
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 Trials Primer
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