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 the disease just eight years later at the age of 23.
It started with what Jacob describes as a simple limp, so slight that he didn’t even notice it. “Mom and dad would ask me, ‘Why are you limping?’ and I didn't really have the answer. I didn't even realize I was doing it,” he shared on a testimonial video on YouTube. A few months later, after a performance at his church, Jacob fell while trying to step off a riser, and his father, Dale, knew it was time to see a doctor.
In March 2022, after several months of multiple doctor visits and many tests, Jacob was diagnosed with P525L FUS ALS—a nano-rare version of ALS only found in people under the age of 25. Jacob recalls that day saying, “(the doctor) calls us in his office and that's when he shares with us that I have ALS, or Lou Gehrig's disease. I didn't know what that meant. So I asked him and his response, while not good, was that I had two to five years to live. That was the textbook answer.”
“In the early days, Jacob began a clinical trial of a drug named ION363, or ‘Jacifusen,’ and he began showing signs of improvement,” says Dale, Jacob’s primary caregiver along with his wife, Barb. Dale built a Facebook page, TeamJacobWV, and began sharing Jacob’s story and their ALS journey with their friends and family. While their following may have started small, it’s now grown to over 2,000 followers. “We have people from China, Korea, Germany, Australia, and even Nigeria, following us,” says Dale, “some of whom reach out to us on a regular basis.”
The Harpers also connected with the local ALS Association team in West Virginia, working with them to advocate for the ALS community and help raise critical funds for research through their Walk to Defeat ALS® team, “Team Jacob,” and through their very own fundraising event called “Ride for a Cure.” Dale, Barbara and Jacob say they are sometimes overwhelmed with gratitude for the support they receive from their community.
Dale says throughout the past year, Jacob has endured many difficulties, including much more paralysis, but he is continuing in the Jacifusen clinical trial, and the family remains positive. “Jacob continues to eat and breathe on his own and is doing much better than expected considering his diagnosis,” he shared. “We’re still hopeful.”
Meanwhile, Jacob encourages everyone to learn more about the disease and spread awareness of the impact it has on families like his. “Please share with everybody because this disease is so little known. Not a lot of people know about it or what it does, so I'd really like to get the word out and really bring awareness to this,” says Jacob.
Special thanks to the Harper family for allowing us to share Jacob’s story and their family’s personal journey with ALS. If you want to learn more about how you can help people like Jacob during ALS Awareness Month and beyond, visit our website HERE.
More information about genetics and ALS and the research being done can be found HERE.
To learn more about the recently approved drug, Qalsody (tofersen), used to treat another type of genetic ALS, visit our website HERE. Qalsody is the third FDA approved treatment for ALS in the past 6 years, a tremendous reason for hope for the future.
To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog.
My husband, David, was recently diagnosed with ALS. He has weakness in his right hand.
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