May 2022 Foundation eNews

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Foundation News

Hope Through Caring Gala – Last Chance to Purchase Tickets!

We’re less than three weeks away from the Hope Through Caring Gala! We’re excited to celebrate with the ALS community and honor three incredible individuals for their pioneering contributions to ALS care and research

Join us on Saturday, May 21 at the Radisson Blu Aqua Hotel in Chicago for an evening of great food, friends, and entertainment, hosted by WGN-TV’s Paul Lisnek – and don’t miss the silent and live auction, with a wide range of exciting items and experiences.

There’s still time to purchase tickets to attend in-person or virtually. Your support of the Hope Through Caring Gala helps us provide the most comprehensive care and support to people living with ALS. As always, people living with ALS and a plus one attend for FREE.


Advocate During ALS Awareness Month and Beyond 

Did you know that May is ALS Awareness Month? Consider taking a minute to share a few facts about ALS on social media, such as:

  • The average survival rate for someone affected by ALS is 2 to 5 years.
  • More than 90% of people with ALS have no known family history of the disease.
  • Researchers predict an individual’s lifetime risk of acquiring ALS is about 1 in 300.
  • Each year, at the Foundation, we lose one-third of the people we directly serve to ALS.
  • U.S. military veterans are twice as likely to develop ALS compared to non-veterans.

As we all know, ALS does not discriminate. If it does not impact you, it could very well affect someone you care about. So here are a few easy actions that you and your friends can take to help raise awareness of ALS.

You can make a difference this month and beyond because there is no time to waste!

Treasuring the Time on Mother’s Day

Joe Collins is a member of the Gratitude Group. His mother, Betty Collins, was diagnosed with ALS in 2014, but Mother’s Day remained a day of celebration for his family

“Prior to mom’s ALS diagnosis and even after, we went out for brunch as a family,” says Joe. “Mom looked forward to it more than anyone, and as long as I can remember, she was the one who picked the restaurant or other venue.”

With the fast-moving nature of ALS, many families start to focus on the precious gift of time and living in the moment. As Joe explains, “Mom had a saying, ‘I don’t care what we do or where we go, as long as we’re all together.’”

If you have a friend who has lost their mother, reach out to them on Mother’s Day, if only just to say hello and that you’re thinking about them. Give them some of your time, because as we in the ALS world know, every moment together matters.

“This will be our second Mother’s Day since mom passed away,” says Joe. “If I could have just one more Mother’s Day with her, I wouldn’t care what we did or where we went, as long as mom and I were together. I know that we’re actually together with mom even more so than before because she’s with us always now. But I’d still do anything for just one more Mother’s Day brunch.”

To make a tribute gift in memory of someone special to you, visit our website.

Webinar: Securing Your Family’s Financial Future

Amid the everyday challenges of navigating treatment and care for ALS, it can be hard to focus on financial planning. But taking the time to gather information and thinking about your values is a powerful gift to yourself and your family.

Join us for our next ALS Learning Series webinar, Financial and Estate Planning for the ALS Community, on Thursday, May 12 from 12 – 1:30PM (CT). This webinar will guide people living with ALS and their loved ones through easy-to-understand, actionable steps for securing their financial future.

Speakers include Terry Savage, a nationally recognized expert and speaker on personal finance, who lost her friend and colleague Michael Falk to ALS in 2021; and Kerry R. Peck, JD, an award winning attorney and managing partner at Peck Ritchey, LLC, whose practice is focused on elder law and estate planning.

We are proud to offer this webinar at no cost to the ALS community. Thank you to Mitsubishi Tanabe Pharma America and Cytokinetics for their sponsorship.