Gayle Jacobs’ journey with ALS started in 2017 when she was diagnosed at the age of 44. An optimistic and positive person by nature, she realized what an incredible network of support she had surrounding her with her family and friends, and she quickly set her sights on how she wanted to live her life with ALS.
In March 2022, after several months of multiple doctor visits and many tests, Jacob Harper was diagnosed with P525L FUS ALS—a nano-rare version of ALS only found in people under the age of 25. Jacob is on the Jacifusen clinical trial trying to slow progression, as he shares his testimony with people from all over the world.
While knowledge is power in many circumstances, knowing you have lost several members of your family to familial ALS, and understanding you may also carry the mutated gene, can be a heavy burden to live with. With technology continuously evolving, new potential treatments in the ALS research pipeline through clinical trials and the ability to get answers through a genetic test, there are more factors to consider today than ever before. Peter Hackett shares his family's ALS story and what led him to the decision of taking the genetic test.
In recognition of Rare Disease Day, Kristina Woody shares more about what it’s like to be a caregiver for her husband, Lamar, and her unique perspective on the rarity of ALS.
When I was about 8 years old, I asked my mother about my grandmother, and she shared her mom died when she was 10 years old from “paralysis.” What my mother never knew was that I was afraid when I turned 10 years old, she would die of “paralysis,” just like her mom. Little did I know a mere 10 years later that fear would come true. And that is the beginning of my journey in life with the beast known as ALS.
In most cases, a person with a mutation in an ALS-linked gene usually has a 50-50 chance of passing it on to their children. But just because someone inherits an ALS-linked gene, it does not automatically mean they will develop the disease, and family members who develop ALS may have different disease experiences.
Jared Salomon lost his father to ALS in October of 2020 when he was just 29 and planning his engagement to his now beautiful wife, Maryn. While his father was not around to physically attend his wedding, he was there in spirit and left an amazing gift for his family and friends; a memory that will live on and be cherished forever.
Looking back on the beginning of 2022, I would have never anticipated telling my family’s story to so many with the help of The ALS Association. I was working two jobs as a nurse, transitioning to another clinical position, all while trying to support my husband Lamar (diagnosed with ALS in 2018) with his goals toward completing his college degree, and maintaining the busyness of motherhood, raising our 8-year-old daughter.
When I was diagnosed with ALS in 2018, my wife Kristina and I knew we were in for the fight of our lives. But I don’t think we were truly prepared for the devastating impact it would have on our family.
Holiday celebrations and traditions are times of fun, fellowship and of course, food. And, while the holidays are meant to be enjoyed, they can also be a tremendous stressor for people living with ALS and their families.