The decision to volunteer is often an intensely personal one. Some decide to volunteer out of a sense of wanting to give back to the community after a long career. Others feel an affinity for an organization’s mission. Still others seek out opportunities that might inspire them creatively or for the opportunity to learn new skills. For some, it is an opportunity to meet new people and make new friends. This list goes on, and at the end of the day there is a story of “why” for every volunteer.
April is National Volunteer Month, a chance for us to say thank you to everyone who chooses to volunteer their time and talents to the cause of serving our ALS community and working towards the goal or creating a world without ALS. Still, for our volunteers and our organization—as for the entire world—the last year has been strange and challenging. The safety protocols the pandemic has required, especially for people with ALS and their families, has limited the volunteer opportunities available. As we all strive to return to something approaching “normal,” we are reminded that the passion of those wanting to help has not lessened, it has merely been directed differently.
Continue reading “Any Small Way I Can”—The “Why” Story of One Volunteer
It is fair to say that there has been much enthusiasm about safe and effective vaccines for COVID-19 being developed quickly and being distributed across the country. It is also fair to say that there has been more than a little confusion about how the vaccines are being distributed, and how and when they will be available to people from various communities, including for people with ALS.
In an effort to provide the most current and reliable information available, the National Organization for Rare Disorders (NORD), in partnership with The ALS Association, Cystic Fibrosis Foundation and Muscular Dystrophy Association, will host a special webinar with leaders from the US Food and Drug Administration (FDA) and the Centers for Disease Control (CDC) to discuss the COVID-19 vaccines with the rare disease community. The webinar is Friday, January 15, from 1 – 1:45 p.m. CT. The webinar is free, and you can register here: https://bit.ly/Vaccine-Webinar.
Continue reading The COVID-19 Vaccine—What You Should Know
As we move into 2021 in earnest we once again asked our Board Chair Josh Rogers to share some thoughts on the year ahead. Here is Josh’s message to us all:
Happy new year!
With the full year ahead of us, most of us hold terrific hope that 2021 will be an improvement over 2020.
Continue reading Hope for the New Year
There is no doubt, 2020 will be a year not soon forgotten. We all have had our lives turned upside down in ways big and small, and we are all hoping for 2021 to turn things right-side up.
And while 2020 has been for many a year we’d be fine forgetting, there has been much worth remembering for our Chapter and the ALS community. For while 2020 has been a struggle, we are inspired by those who have struggled to overcome the obstacles in the path. And we are reminded that for people with ALS the struggle never ends. ALS does not stop for global pandemics, or for the challenges created by them.
Like so many others, when the scope of the COVID-19 pandemic became clear, our Chapter was forced to reimagine how to provide services to the community we serve. Our Care Service team worked with our partners to find new and different ways to meet the needs of people with ALS. Visits that would normally have been in person now took place over the phone or internet. Here on ALS Connect, we tried to keep you informed about how we and others in our community we meeting these challenges each and every day.
Continue reading What a Year It Has Been
Less than a week before Thanksgiving, Pat Quinn, co-founder of the ALS Ice Bucket Challenge, passed away from the disease. His passing follows that of the other Ice Bucket Challenge co-founder Pete Frates, who passed away in December 2019.
It might be tempting to think of Pat’s passing as just another example of how difficult 2020 has been, but when Pat spoke on the 5th Anniversary of the Ice Bucket Challenge in August 2019, his message was not one of dwelling on our setbacks, but one to embrace the possibilities life offers:
Continue reading Remembering Pat Quinn, and how “Everything can Change in an Instant”