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
December is here and the 2020 holiday season is in full swing! Sure, maybe a bit more of the holiday shopping is being done online, and what would normally be in-person gatherings are now Zoom meetings dotting the calendar. But even in these most unusual circumstances, this time of the year feeds feelings of generosity and fuels a desire to give. And although this holiday season may look different due to the COVID-19 pandemic, holiday giving remains more important than ever.
Continue reading Your Year-End Gift Has More Impact than You Might Think
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”
Medicare’s annual open enrollment period for health and drug coverage has begun and will continue through December 7, 2020. This time period allows those eligible to sign up, and those enrolled to change their selected Medicare health/prescription plan for the following year. It can be difficult to navigate, but the decisions you make during this period are critical, and you deserve to understand exactly what’s available.
As we approach the open enrollment deadline, we want to cover some Medicare basics, what this period means for people living with ALS, and resources available to select the right plan for you.
Continue reading Navigating Medicare Open Enrollment: What’s the right plan for you?
A personal message from our President and CEO Maureen Barber Hill:
To Our ALS Community,
I am writing to let you know that I will be retiring as President and CEO of our Chapter on Feb. 12, 2021, bringing my 10 years with this incredible organization to a close. Our Board of Directors has named my esteemed colleague Katie McGovern, who many of you know as our Development Director, as my successor, and I couldn’t be more pleased with that decision. You can read the news release here.
Continue reading My Upcoming Retirement—Thank You for the Last 10 Years