Innovation plays a key role in The ALS Association’s fight to develop treatments and a cure for ALS and to empower people living with the disease to live their lives to the fullest. During June and July, we are celebrating some of the key innovations helping us change the nature of ALS forever.

A diagnosis of ALS takes its toll in many ways. The person living with ALS eventually loses the ability to move, eat, speak, and breathe. But the effects of this disease don’t end there. Witnessing a loved one’s experience and being a caregiver have profound effects on family members and children, too.

Thankfully, your support helps give hope and provide compassionate care.

For example, The ALS Association St. Louis Regional Chapter provides one-on-one counseling for kids of all ages affected by ALS. The chapter recently expanded the program by providing hand-carved Circle of Life Boxes to every child living with a person with ALS who is registered with the chapter.

These “memory boxes” are used as part of grief work and counseling to help capture feelings surrounding loss.

Annika and Micah Robinson are the grandchildren of Ramona Warner from Troy, Missouri. Ramona has familial ALS and lost her sister to the disease just before she herself was diagnosed in 2016. Ramona moved in with her daughter’s family so they could meet her care needs.

The memory boxes can help children capture the meaningful moments with their parent, grandparent, aunt, or uncle, and take control to understand their feelings, which must often be put aside by the daily care needs required by a person with ALS.

The box encourages daily interaction and attention to their thinking and feelings, helping to assure the relationships are the legacy left behind,  not the sense of loss.

Psychological care of the person living with ALS and family members can’t be forgotten. The ALS Association strives to address this critical need through various innovative, cost-effective ways to help family members help each other during the difficult journey with the disease. You can make a difference for these families.