ALSUntangled—Making Sense of Alternative ALS Treatments

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

A Beneficial Way to Give—Charitable Gift Annuity Q&A

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

Listening to Learn—ALS Association Community Survey Results

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

Extra Hands for ALS—John Burroughs Students Honored for Lending a Hand to Make a Difference

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 students 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” club.

Continue reading Extra Hands for ALS—John Burroughs Students Honored for Lending a Hand to Make a Difference

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.

Continue reading A Clinical Trails Primer

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.

Continue reading The Ice Bucket Challenge—Looking Back to Look Forward

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.

Continue reading Perspectives from Lead Outreach Volunteer Sarah Diaz