After Bryan was diagnosed with ALS, the Stones immediately adopted the saying, “Today is the best day of the rest of our lives, and we’re going to make the most of it.” And in the days and years since, Bryan has done just that and is an awe-inspiring example of a true ALS hero living his life to the fullest.
We recently talked with Dr. Sonia Vazquez-Sanchez, postdoctoral fellow from the Cleveland Lab at the Ludwig Institute for Cancer Research at the University of California at San Diego to learn about her unique research focused on RNA binding protein TDP-43 and its effects on ALS.
Health disparities in underserved and rural communities present serious challenges for people living with ALS. Like many of our local chapters around the country, The ALS Association Central and Southern Ohio Chapter and the team at OhioHealth ALS Clinic are working together to change that. In the fall of 2019, Michelle Edwardson, Director of Care Services for the chapter, began working with the team at one of their Certified Centers of Excellence, OhioHealth ALS Clinic, to develop a one-day comprehensive educational symposium for people living with ALS, their caregivers and medical professionals.
Following our We Can’t Wait Action meeting with the FDA, we sent a letter to the agency asking it to reaffirm its commitment to the 2019 ALS Guidance and provide us with a detailed report showing how it has implemented the guidance. This week, the ALS Association received a response from Dr. Patrizia Cavazzoni, Director of the Center for Drug Evaluation and Research.
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.
Every year on June 21 the International Alliance of ALS/MND Associations celebrates Global ALS Awareness Day, a day of recognition of ALS/MND – a disease that affects people in every country around the globe.
ALS is not unique to the US, it’s a global problem. It does not discriminate based on race, ethnicity, socioeconomic status, or region. People are living with the disease all over the world, and for every person diagnosed, the impact of the disease will forever be felt by their loved ones.
ALS advocates are pursuing an aggressive set of public policy priorities for people living with ALS and their families. These priorities include increased federal funding for ALS research, creating new pathways for expedited approval of promising treatments including the Promising Pathway Act and ACT for ALS, making permanent expanded access to telehealth, and increasing access to high-quality health care and veteran's benefits.
Clinical trials have proven to be the most reliable way — and ultimately the fastest way — to discover treatments that really work. The goal of clinical trials is to answer specific scientific questions to find better ways to prevent, detect, or treat ALS, or to improve care for people with ALS. People with ALS, along with family members and caregivers, are essential partners in this research. There are many ways you can search for a clinical trial, whether you want to participate in a trial or simply to get more information.
Amber Letters is a wife, a mom, a sister, and was a part-time caregiver for father who lost his battle with ALS this year. To honor her father’s legacy, she is sharing her family’s personal story, their journey with ALS and how they found hope along the way.
Eddie Ilarraza was diagnosed with ALS in 2002, and while his body may have slowly succumbed to the disease over the years, his mind and his spirit have not. Eddie graciously shared his story about his personal journey living with ALS, and how his determination to do whatever it takes to achieve his hopes and dreams has prevailed.