In 2021 we pledged to do whatever it takes to find new treatments for ALS and make it a livable disease until a cure is found. As the year comes to a close, we took some time to reflect on the impact we have made across the focus areas of our mission and some of the communications we have shared along the way.
From the latest updates on ALS research and advocacy to information about caring for people living with ALS and stories from around the country, the Association’s blog covered it all. Here is a quick look at the top 10 features our readers enjoyed most.
- Reasons for Hope in ALS Research with the Discovery of NU-9 - In a study funded in part by The ALS Association, researchers from Northwestern University have identified the first compound (NU-9) that eliminates the ongoing degeneration of diseased upper motor neurons, a key contributor to ALS.
- New Potential Therapeutic Target Identified in CHMP7 - Research funded by The ALS Association identified a potential therapeutic target in the accumulation of a protein called CHMP7 that is connected to TDP-43 mislocalization and development of ALS.
- Vicki Sawyer: A True ALS Hero – Vicki Sawyer was a young wife and mother when she passed away from ALS. Her inspiring story demonstrates the amazing courage and determination she had, making a difference for people living with ALS and providing hope to those who need it most.
- Our Response to the FDA’s Latest Letter and What We’re Doing to Keep Up the Pressure - 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.
- Frequently Asked Questions about Accessing Social Security Disability Insurance and Medicare - The ALS Association met with the Social Security Administration to ensure applications for SSDI are quickly processed and benefits start immediately for people living with ALS. We provided answers to frequently asked questions based on our meetings with the Administration.
- One Man’s Story About Why He Joined the Fight Against ALS - Stuart Obermann and his family made a gift to the city of Huntsville, Alabama through the Eric S. Obermann Foundation he founded in 2006 to honor his son who was fighting ALS.
- 10 Ways to Help Families Impacted by ALS - Only those living through the experience first-hand truly understand the challenges of being a full-time caregiver, particularly for someone living with ALS. To help spread awareness and initiate the conversation about the many ways you can help caregivers and families impacted by ALS, the Association shared tips to think about.
- Terra Beilby: Preserving Her Family’s Journey With ALS - Terra Beilby of Cologne, Minnesota graciously allowed us to share her amazing video with the ALS community, along with her own personal heartfelt message to her father living with ALS.
- One Man’s Determination to Make ALS a Livable Disease - Avi Kremer was just 29 years old when he was diagnosed with ALS in 2004. Working toward his MBA at Harvard Business School, he vowed to not let the disease get in the way of achieving his dreams and living his best life.
- David Kelly: How Should I Live My Life - Throughout his career in education, David Kelly never shied away from a challenge. While receiving an ALS diagnosis was not a challenge he ever expected to face, he continues to do whatever it takes to live his best life.
To continue to learn more of the latest updates from The ALS Association and follow stories about people living with the disease in 2022, follow our blog at als.org/blog.
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