April 2021 Foundation eNews

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Grief & Loss in Children and Youth in Families with ALS: April ALS Learning Series

Last month, our ALS Learning Series webinar focused on talking with children about ALS. This Thursday, April 8 at 12pm CST, Dr. Melinda Kavanaugh returns to shift the discussion to how children cope with grief and loss.

Many parents want to know, will my child be ok to grieve? What does grief look like in children and youth? Youth know things are changing, but they are not always sure what or how. But what we do know is that they want to hear it from their parents and family.

In this webinar, Dr. Kavanaugh will guide families in starting the conversation about death and dying, grief and loss, and how to get support for these conversations. Sign up for the live April ALS Learning Series webinar today>>

Social Security Disability Insurance Update

A new fix has recently been signed into law making the ALS Disability Access Act, signed into law late last year, retroactive for people with ALS who applied for SSDI benefits before December 23, 2020.

As we announced last year, the Act waived the five-month waiting period before people with ALS can access SSDI and Medicare benefits.

“We understand that people living with ALS do not have time to wait to reduce this disease’s financial burden. Congress has fixed the Act to ensure those who applied before the bill was signed into law are granted financial support without delay,” shares Lauren Webb, Director of Support Services and Education.

Thank you to our community advocacy partners and patient advocates who helped to pass this legislation. Learn more about this recent change to SSDI benefits>>

If you run into issues, we advise you to share this March 24 legislative bulletin with your local SSA office. For further help, don’t hesitate to reach out to your Support Service Coordinator.

Living our Values: New Foundation Mission Video

If you tuned-in to our Hope Through Caring Gala on March 20, you got a sneak peek at our new Les Turner ALS Foundation mission video.

Filmed in all virtual settings, our new video highlights the Foundation’s guiding values: Collaboration, Courage, Kindness, Tenacity, Individuality and Expertise.

Six members of our Les Turner ALS family living with ALS and some of their loved ones, helped us share what those values mean to the Foundation and how we embody them each and every day. Watch and share our new video>>