As 2023 comes to a close, we remain committed to making ALS a livable disease for everyone, everywhere, until we find a cure. And while know there is still much to be done, we are heartened by progress being made and look forward to even more this coming new year.
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, our blog covered it all this year. Here is a quick look at the top ten posts our community enjoyed most:
- Remembering Lou Gehrig—Lou Gehrig’s “Luckiest Man” speech has become legendary, even though no complete recording, on film or audio, remains. On the 84th anniversary of his speech, we looked back on Gehrig’s story and his impact on the disease that would come to be known by his name.
- Feeding Tubes for People Living With ALS: Clearing up Some Misconceptions—For many people with ALS, the decision to have a feeding tube placed is an important one, and as with many decisions that must be made during an ALS journey, it’s not of the one-size-fits-all variety. We shared some common concerns and misconceptions about feeding tubes as well as some resources to help.
- Familial ALS: My Family’s ALS Story—Approximately 5-10% of people living with ALS have family members who have also been affected by the disease, often referred to as “familial ALS.” Mary Johnson shared her family’s ALS story and the profound impact the disease has had on her and those close to her.
- Is ALS Really that Rare?—In recognition of Rare Disease Day, Kristina Woody shared what it’s like to be a caregiver for her husband, Lamar, her unique perspective on the rarity of ALS, and how they’ve connected with families in their very own community.
- Gayle Jacobs: Living Her Best Life with ALS—Gayle Jacobs’ journey with ALS started in 2017 when she was diagnosed at the age of 44. A wife and mother of two young boys and an optimistic and positive person by nature, she realized what an incredible network of support she had surrounding her, and she quickly set her sights on how she wanted to LIVE her life with the disease. Image
- Brooke Eby: Using Humor to Spread Awareness of ALS—Who hasn’t heard the old saying, “Laughter is the best medicine.”? No one knows this better than social media star Brooke Eby. Diagnosed with ALS in March 2022 at the age of 33, Brooke is using her innate sense of humor and positive outlook on life to help raise awareness and funding for ALS research.
- Focused Ultrasound and the Potential to Transform ALS Treatment—On our Connecting ALS podcast, Dr. Agessandro Abrahao, professor of neurology at the University of Toronto and a neurologist at Sunnybrook Health Sciences Center, spoke about the new partnership between the ALS Association and the Focus Ultrasound Foundation and how it could lead to possible treatments for ALS.
- Katie Adams: Fighting for Change for Everyone with ALS—As an occupational therapist, Katie Adams had a keen sense of what was happening to her body when her ALS symptoms first started. Little did she know her intuition would not only prove to be correct but would lead her to fighting for access to the care and equipment she needed to live with ALS. Image
- Jacob Harper: Fighting Genetic ALS Every Day—Like so many of us around the world, Jacob Harper took the Ice Bucket Challenge in August of 2014 to support the ALS community. Little did he know he would be diagnosed with P525L FUS ALS—a nano-rare version of the disease only found in people under the age of 25.
- Genetics and My ALS—Larry Falivena is a member of the ALS Association’s Board of Trustees and is living with ALS. He is shared his unique experience with the disease and his perspective on why genetic testing is so important to the ALS community.
So, that’s a wrap for our blog in 2023! Follow us and members of the ALS community throughout the new year as we continue our fight against ALS. Learn more about how you can get involved today.
If you’d like to share your story with us in 2024, email us at email@example.com.