About
On March 16th , 2022, Jacob Harper, 23 from Winfield, WV. was diagnosed with P525L FUS ALS.
The debilitating incurable disease came with a 3-5 year life expectancy. Due to what we consider
absolute miracles, Jacob was able to get a second and third opinion on his diagnosis in record time.
He has begun a clinical trial of a drug named ION363 or "Jacifusen", which appears to have slowed or
possibly even stopped his progression. After the very first Jacifusen treatment, Jacob began showing signs
of improvement in various ares of his body, however, whether or not he will ever walk again is still
unknown at this time.
UPDATE: 08/09/2024 - Jacob is still doing remarkably well, considering his diagnosis. His nano-rare version of ALS is mostly found in people under the age of 26. At any given time, there may be between 1-30 people in the world with this specific diagnosis. The life expectancy changed from 3-5 years, to 1-3 years with him becoming terminal within the first year. We are approaching the three-year mark and, although there is much paralysis and difficulties, Jacob is still doing much better than expected. GOD IS SO GOOD!
If you have ALS, it’s important to remember you’re not alone. ALS affects people of all ages, races, and ethnic backgrounds. ALS is the most common of the motor neuron diseases (MNDs), which is a wider group of disorders that can lead to loss of physical function.
Our Mission
Our mission is to educate as many people as possible on the disease, "Amyotrophic lateral sclerosis" (ALS), also known as Lou Gehrig’s Disease, a disease that affects parts of the nervous system that control voluntary muscle movements (the muscles that people move at will, like those of the arms and legs).
