Over a year ago, Sophia Harding became a volunteer for The ALS Association, a fourth-generation member of the Barnett family to join the fight against ALS. In the midst of the COVID-19 pandemic, she moved to Florida and joined the team at The ALS Association Florida Chapter as a Phone Friend Volunteer.
Thanks to the tireless work of ALS advocates, people diagnosed with ALS who already qualify to receive SSDI benefits are immediately eligible for Medicare as well. That makes Medicare open enrollment an important window of time for the ALS community.
When my husband Tom was diagnosed with ALS, we were embraced by the ALS community. But as his health declined, I didn’t really feel ALS was what was stealing my husband from me. I felt more connected to people losing loved ones to frontotemporal dementia, also known as FTD. I did lose my husband to ALS… a particularly cruel and nasty form of ALS that includes FTD.
Dr. Heidi Tarr Henson, a Massachusetts woman recently diagnosed with ALS, reflects on on in-the-moment advocacy, teachable moments and the power of setting boundaries with ourselves and others.
We recently spoke with JoCarolyn Chambers, care services manager at The ALS Association, to learn more about her experience in the field of grief counseling, how to handle these difficult and sensitive conversations about loss and the advice she has for people impacted by ALS.
Telehealth has been an important element in U.S. health care for decades, but the COVID-19 public health emergency has put a spotlight on the need to maintain and expand access to telehealth to ensure everyone can receive appropriate care when and where they need it.
After Amylyx’s announced that it intends to file a new drug application for AMX0035, The ALS Association immediately called on the U.S. Food and Drug Administration to approve the treatment for all people with ALS as soon as possible. Connecting ALS talked to the team at Amylyx to learn about the path ahead for access to AMX0035.
We recently talked with Kaiden Anderson to learn a little more about his personal connection to ALS, what receiving the scholarship means to him, and his future plans in healthcare.
The ALS Association has created a new diagnostic guide, thinkALS, that will help neurologists more quickly diagnose ALS. Earlier diagnoses allow patients to participate in clinical trials and access treatments and benefits sooner, as well as receive care services support.
We recently talked with Emma Thompson, one of this year’s award recipients, to learn a little more about her personal connection to ALS, what receiving the scholarship means to her, and her future plans in nursing.