ALS CONNECT

Adding to Research Momentum—The First ALS Platform Trial Takes Shape

We’ve written before here about how there are real, tangible discovers being made in ALS research, but for everyone involved the pace of discovery can’t move fast enough. As such, when a new idea presents itself that has a real chance to move the needle it worth noting. Such an idea is taking shape right now with the first ALS platform trial at The Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital.

ALS Medicare Resource Line—Help with Getting the Help You Need

Sometimes getting the help you need starts with figuring out what help is out there. This is never more true that when you are dealing with a government program, like Medicare. What are the resources? Are you eligible? How do you apply? How do you know what information is reliable?

Now, for people with ALS and their families, there is a reliable, trusted resource they can turn to, free of charge. In partnership with Patient Advocate Foundation, the ALS Association has recently introduced a new resource for the ALS community: The ALS Medicare Resource Line.

Wishing You a Hopeful New Year

As 2020 begins in earnest with the first full work week, we asked our Board Chair Josh Rogers to share some thoughts on the upcoming year. Here is Josh’s message for us all:

The ringing in of each new year brings with it hope. When the ball drops and fireworks fill the sky on New Year’s Eve, when we hang a new calendar on the wall and open it to January, when we walk through the front door at work on the first business day of the new year, we press the symbolic reset button on life. We put behind us the challenges and neglected resolutions of the year before and welcome with optimism the next 12 months.

The Year That Was—Looking Back

It’s the time of year where you almost can’t help looking back. In a few short days 2019 will be no more. The year has been one of milestones and new beginnings for us here at the ALS Association St. Louis Regional Chapter, and while we are looking back we wanted to include you and remember what a year it’s been.

Walk a Crooked Path: A Time of Reflection

By Saundra Stewart

My sweet husband has now been gone from this earth for three years. If I thought the years preceding his death were difficult, it was because I didn’t have a clue what the years without him would be like! We had “grown together” in an amazing way in our just over fifty years of marriage. We had our disagreements and adjustments, just as any couple who has been together for that length of time has had. But we both felt it was well worth the effort.

When Don began showing symptoms of ALS, we made some decisions that would help me when we got farther down the road. I told Don very honestly that I would never put him in a care facility as long as I was at all able to care for him at home. And I meant it. There were times when he would see my weariness and he would say, “You probably ought to just put me in a home.” Instantly my resolve would revive. “Never!” I insisted.

We talked about what he would like his children and grandchildren to remember most about him. One thing we wanted to do (but never did) was to make a recording of his speaking to each of his children and grandchildren individually. The time just never seemed right, or he didn’t know exactly what he wanted to say. You know how it is. It was a great thought, but never carried through to fruition. We both regretted at the end of his life that we hadn’t made that happen.

Don had a whole collection of Bibles. Having been a minister for a number of years and a teacher in church for the years following, he had a nice stockpile. He asked me to collect them all, and he wanted to give each of the grandchildren a Bible. He had marked in them, made notes in them, and some of the pages were a bit worn, but those things would just show the grandkids how much he had used them and treasured them. We took care of passing them out in the final months and weeks of his life.

Year End Giving That Isn’t Just Impactful, But Meaningful

Thanksgiving has passed, December is here and the holiday season is suddenly in full swing. Between holiday gatherings, shopping, wrapping presents, cooking, and maybe one or two—or more—Hallmark movies, the most wonderful time of year can feel, well, mostly overwhelming. On top of it all, there seems to be a big push for donations by almost every charitable organization you’ve ever heard of.

It’s not your imagination. The reality is that the end of the year is a very important time for nonprofit organizations. Nearly a third of annual charitable giving happens in November and December, causing organizations to rely heavily on donations made during this time to fulfill their mission. When you make a year-end gift, you help nonprofits like The ALS Association provide their core services, things like caregiver relief, nutritional supplementation and equipment loan. Additionally, you could allow for additional or new services to unfold, perhaps something innovative like a robotic arm or a feeding machine. Just as importantly, you help sustain the future, allowing the organization to be positioned successfully in a new calendar year, so that all services to people with ALS remain free of charge and needs are met to the fullest extent.

Being Thankful Through Challenging Times

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 heavy task.

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.