People living with ALS and their families need a great number of care services. We use innovative technology and partnerships to help fill the gaps in care for underserved populations and connect people with ALS to opportunities for greater quality of life.
Investigators at Emory University School of Medicine reviewed 23 years of data from 1997-2020 for patients seen at the Emory ALS Center. To allow for adequate analysis of disease survival time, researchers included all patients who self-reported their race as Black or White and symptom onset was before January 1, 2017. A total of 1,298 patients were included in the study, 203 of whom were Black, and 1,095 of whom were White.
A comprehensive list of the terms used to describe ALS, its symptoms, and other factors that will be a part of patients' and caregivers' lives after diagnosis.
We spoke with Kara Nett Hinkley, vice president of state policy at The ALS Association to learn more about the role that state advocacy can play in the fight against ALS.
We recently spoke with Amber Letters - daughter, wife, mother, and part time caregiver of a person living with ALS. Amber and her family live in Pittsburgh and have been very involved with The ALS Association Western Pennsylvania Chapter. Here is what Amber had to say about her family’s journey with ALS in her own words.
This is the first in a series of posts from people living with ALS who are featured in our #VoiceYourLove campaign. Before I was diagnosed with ALS, I didn’t know much about it - just that it was a debilitating disease. I was 27 years old and had no idea what to expect. I certainly didn’t plan for how much love it would bring into my life.