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.

We marked milestone anniversaries this year, with the 20th St. Louis Walk to Defeat ALS. The weather this year is sure to make the 2019 event one we’ll remember for 20 more years. Still, even with the rain, wind and lightning, hundreds of people showed up in support of people with ALS. Each and every year we are awed by our community’s compassion and drive in support of helping us move towards a world without ALS. Thank you!

And we were further reminded of our community’s impact with the 5th anniversary of the Ice Bucket Challenge and the Ice Bucket Bash. It was inspiring to see so many video memories from the summer of 2014 and to remember all the ways the Ice Bucket Challenge changed the fight to defeat ALS once and for all. It was also a reminder of all those who joined the fight to defeat ALS by participating in the Challenge. That there is so much still to do was brought home to all of us with the passing of Ice Bucket Challenge Co-Founder Pete Frates just last week. Rest in peace, Pete.

Our care services team saw an influx of new faces in 2019. In March care services added three new team members: Care Services Coordinators Paul Dohearty and Mary Love, and Director of Care Services Anna Zelinske. Here on ALS Connect, we heard from Anna as she began her journey with us, and in October our Associate Director of Care Services Melissa Smith introduced herself as well. Joining with Care Services Coordinator Lori Dobbs, these talented individuals are now part of what is now a fully-staffed, multidisciplinary care services team that has expanded the breadth and reach of services our chapter provides to people with ALS and their families throughout our service area, including through our new Illinois-based Care Services Coordinator Melinda Osborn, who came onboard in October.

In addition to the services provided by our care services team, 2019 marked the first year of the Jane’s Angel Fund grant program, which provided more than 70 grants to nearly 50 people with ALS totaling more than $60,000 in financial support for expenses that are not traditionally covered by private insurance, Medicare or Medicaid.

And you continued to have an impact as well. Through your support of our calls to contact members of congress you were a part of more than 13,800 letters and 3,600 tweets to members of Congress this year by ALS advocates across the country. Through efforts like these you have help secure Federal funding for ALS research that will further the promising work done in recent years.

If you are a regular reader of ALS Connect, you heard about all of that, and more. Throughout 2019, we have tried to provide you with posts that have informed you about the wide range of issues of importance to people with ALS. We have explored what is happening with ALS research, offered insights from our Care Services team and others on living with ALS, and shared some of the ways you and others in our community can make an impact for those with ALS. We hope you were moved as we were by the thoughts from Saundra Stewart through her “Walk a Crooked Path” series, which concluded last week.

And we cannot bring 2019 to a close without remembering all those who were lost to ALS this year. It is for them and their families that we hope that 2020 will bring us that much closer to a cure for this devastating disease. Above all, that is the reason we hope 2020 will be year to remember.

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