We know it will take all of us, working together, to make ALS a livable disease until a cure is found. As this year comes to a close, we took some time to reflect on the impact we have made across the focus areas of our mission in 2022 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 inspiring stories from around the country, the Association’s blog covered it all. Here is a quick look at the top ten posts our readers enjoyed most:
The Woody Family, Living with ALS – Lamar Woody was diagnosed with ALS in 2018 at the age of 30. Currently living in Auburn with his wife Kristina and 9-year-old daughter, Natalie, we started following the Woody family this year, sharing their story about life with ALS and shining a spotlight on the love and support they are receiving from their amazing community.
Meet John Kalambogias, ALS Researcher and 2021 Milton Safenowitz Postdoctoral Fellow – Each year we share profiles of the Association’s Milton Safenowitz Postdoctoral Fellowship award winners with the ALS community, giving them the opportunity to “get to know” some of the many faces behind the scenes working tirelessly to find new treatments and a cure for ALS.
Why I’m Signing the ICER Petition – And You Should, Too – Daniel Cramer, the Association’s Associate Director of Congressional Affairs, shared his personal connection to ALS and why he is passionate about ALS advocacy.
Sarah Trott: ALS and Handling Grief and Loss – Sarah Trott, former contestant on The Bachelor, shared her experience as an ALS caregiver for her father who lost his battle with ALS, her challenges with grief she experienced and the steps she is taking to overcome her terrible loss.
ALS Association to FDA: You can still do the right thing for people with ALS – The FDA’s Peripheral and Central Nervous System Drugs Advisory Committee voted against recommending AMX0035 for approval to treat people with ALS in March of this year. Following the vote, the Association called on the FDA to consider the strong safety profile of AMX0035, as well as the serious unmet medical need of people living with ALS and approve the drug for clinical use.
Extending Survival for People Living with ALS – The ALS Association collaborates with experienced ALS clinicians across the country to help ensure people living with ALS have access to the specialized multidisciplinary care they need.
Diana Kirk: Why She Fights for the ALS Community – Diana Kirk shared her inspiring story about her personal journey with her father and ALS, and how she continues to honor his legacy, helping to make a difference for the ALS community.
Ellen and Lorenzo Trujillo: Living with ALS, One Day at a Time – Long-time natives of Colorado, Ellen and Lorenzo Trujillo enjoyed an active busy lifestyle. Until ALS entered the picture, their plans for living a long and full life were all they dreamt about. They shared their inspiring story of their personal journey with the disease.
ALS Association Welcomes Decision to Approve Oral Edaravone – The ALS Association shared news of the FDA’s approval of an oral formulation of the drug edaravone, produced by Mitsubishi Tanabe Pharma America (MTPA) to treat ALS.
An ALS Veteran Story, with a Twist – When former veteran Michelle Melland began experiencing muscle twitches in 2011, she didn’t think much of it, and certainly didn’t suspect anything serious. “The chances of having ALS are miniscule and I never dreamed that would be my diagnosis,” Michelle said. But it was.
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