Walk to Defeat ALS – ALS CONNECT

In Memorial—Why We Walk

It started out of necessity, really. When it was decided—for the well-being of all involved—that we would not be gathering in Forest Park for the St. Louis Walk to Defeat ALS this Saturday (June 27), our Chapter had to think about new ways to put on the event that keep the sense of community that joining together in support of those with ALS and in support of the search for a cure creates. We think we’ve created a Walk that will bring that sense of community to streets and neighborhoods throughout our region this Saturday, and we hope you’ll take part.

Among the most important parts of Walk day is the memorial banner, which lists the names of each person our Chapter served who has lost their battle with ALS and anyone who is being walked in memory of. As we won’t all be gathering together this year, we needed to find a new way to remember those who we have lost, so we created a virtual memorial banner and posted it to our Walk to Defeat ALS Facebook page.

The post resonated with many in our community, and we wanted to share it with you here as well. ALS does not stop, and neither do we. This Saturday we Walk in honor of those living with ALS and in memory of all we have lost. We hope you’ll join us.

Still Walking for a World without ALS, Even in a World with COVID-19

We are a little bit more than a week away from the 2020 St. Louis Walk to Defeat ALS, and just a couple of days away from Father’s Day as well. Because of COVID-19, both will be different than they have been in years past, but both are still important.

As you have heard, for the safety of the people with ALS we serve, their families, our staff and supporters, the 2020 St. Louis Walk to Defeat ALS will not occur in Forest Park on June 27. We will still be walking to defeat ALS, but we will all be walking where it safe for all involved: down your street, in your neighborhood park, around your coffee table, just about anywhere you can think of. This year we are asking you to make the Walk your own.

And while we won’t all be gathered together physically this year, we will gather digitally. Starting at 9:45 a.m. on the Walk to Defeat ALS Facebook page, we’ll be sharing content about this year’s Walk and how all of you are still making a difference for people with ALS and their families. We want to see how you are “Walking Your Way” as well, so when you post about your Walk on social media be sure to use the #ALSWalkYourWay hashtag so we can share it with others.

Walk Your Way—The 2020 Walk to Defeat ALS Will Be Everywhere

We’ve all had to rethink things this spring. From work, to school, to even a quick trip to the grocery store, everything we thought of as normal or routine now requires us to think differently. Sometimes this is easy, often it is hard, but it is always different than we were used to.

It has been the same with us and the 2020 St. Louis Walk to Defeat ALS. We have had to think differently about how we can bring this event to you, and we have!

For the safety of the people with ALS we serve, their families, our staff, and supporters, our 2020 St. Louis Walk to Defeat ALS will not occur in Forest Park this year. Instead, we’re bringing the Walk to you!

An ALS Awareness Month Like No Other

No doubt, this is a May like no other. But at the same time, the world continues, and as we mark May as ALS Awareness Month, we take this opportunity to remind our larger community what our ALS community knows all too well: that even with all the uncertainty and unrest caused by COVID-19, ALS doesn’t stop, and neither do we as we work to support our ALS community as they face new and existing challenges.

Because of the need for extreme social distancing during this pandemic, people with ALS and their caregivers have no choice but to take extraordinary precautions and isolate themselves nearly completely. This means they are at risk of losing access to services that are traditionally delivered in person at their homes or in a clinic. Our Care Service team has been working to bridge this connection gap by reaching out by phone and video conference, and by ensuring people with ALS have access to their clinic staff in whatever way makes sense for them. Even as we have been working remotely, our staff has been in constant collaboration around how to best serve our community and how we can prepare for the time when can once again gather together.

But even though we are still mostly at home, you don’t have it sit this ALS Awareness Month out. There are many way you can have an impact on our fight to end ALS.

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.

Craig Kramer: Why I Walk

It’s been over a year now since I’ve been diagnosed with ALS. Has my life changed? Absolutely! And a huge chunk of it has changed for the better! But it isn’t only about me; it’s all about family and friends—and it turns out there are lots of them!! Here are some of the wonderful life-changing things that have happened since my diagnosis, and some of them likely wouldn’t have occurred:

Unlocking ALS—One Step at a Time

The Walk to Defeat ALS® is a colorful event. Team t-shirts from nearly every color of the rainbow dot the landscape, along with hats, shoes, signs. Color is everywhere.

But returning this year along the route, there will be an additional pop of color—a pop of color with a purpose. In 2018 The ALS Association launched Unlock ALS at Walk events to provide participants with a tangible way to recognize the real reasons they Walk to Defeat ALS. At the walks, participants select a lanyard in one of four colors to represent their connection to ALS. These colors represent:

Yellow: I have ALS
Blue: I Walk in Honor of Someone with ALS
White: I’ve Lost Someone to ALS
Red: I Support the Cause and Want to Defeat ALS

Walking Together: Walk to Defeat ALS Committee Members Walk for Many Reasons

As the days grow longer and warmer, we in the Midwest turn out thoughts to summer. And with summer comes the ALS Association St. Louis Regional Chapter Walks to Defeat ALS®. The Springfield, Illinois, Walk is June 15 in in Southwind Park. The St. Louis Walk is June 22 in Forest Park.

These walks would be not be possible without the work of the Walk Committees. Committee members are involved as participants and behind the scenes, playing an integral role in the success of the events. The committees assist in booking vendors, securing in-kind donations, supporting team captains, recruiting volunteers and assisting with the planning of the events.

ALS Reflections from Outgoing Board Chair Dave Van de Riet

At the end of this month, Dave Van de Riet will complete his term as chair of The ALS Association St. Louis Regional Chapter’s Board of Directors. Over the past six and a half years, Dave’s leadership has been characterized by innovative ideas, strategic thinking and an overwhelming commitment to providing quality care to families facing an ALS diagnosis. His energy and passion for the mission will be difficult to match, but he leaves us a better organization and on strong footing for the future.

Dave will continue to serve people with ALS and their families locally in his role as the St. Louis Walk to Defeat ALS® Chair; as a member of the fund development, finance and executive committees; and in a national capacity as vice chair of The ALS Association’s Governance Committee and member of the Board of Representatives.

Thank you Dave, for your extraordinary leadership and tireless dedication to our mission and the people we serve.

In this post, Dave reflects on his tenure as Board Chair.

Back in July of 2012, I was honored to become the board chairman of the ALS Association St. Louis Regional Chapter. I had no idea what kind of journey it would be. Certainly, I had some idea of the responsibilities, the meetings and the commitment. I had the pleasure of serving as Vice Chair while watching past Chair Rick Palank ably lead the Board and along with our President/CEO – Maureen Barber Hill – establish a very strong foundation for the stability and success of the Chapter. What I didn’t know, however, was how much the job could change me.

Fighting in Memory of Grandma Ann

By Molly Cruitt

Earlier this summer, I got married at the church I grew up in, three days after my grandmother’s 78^th birthday. My grandmother wasn’t there.

It’s been almost a full decade since my grandma lost her battle with ALS plus dementia, and it’s easy to get lost thinking of all the things she’s missed and the moments that will continue to happen without her present.

Continue reading Fighting in Memory of Grandma Ann