On January 9, 2025, Creston Nelson was diagnosed by her medical team at Mayo Clinic-Jacksonville with amyotrophic lateral sclerosis (ALS), This was a devastating diagnosis for Creston and her family.
Family and friends are raising money for the nonprofit organization Help Hope Live in honor of Creston. Donations will be used by the organization to pay Creston’s 24/7 team of paid caregivers and out-of-pocket medical and equipment costs,
Amyotrophic lateral sclerosis (ALS), sometimes referred to as Lou Gehrig’s disease, is a degenerative neuromuscular disease affecting the nerves in the brain and spinal cord that control muscle movement. Over time, as the brain loses connection with muscles, persons with ALS (PALS) experience muscle weakening, which robs them of their ability to move, speak, eat, and eventually breathe. Military veterans and fire fighters have a significantly higher chance of getting ALS, nearly double that of the general population. In fact, ALS is considered a service-related disease by the U.S. Department of Defense.
There is no cure for ALS; it is 100 percent fatal.
The average life expectancy for PALS is 2-5 years. The estimated annual out-of-pocket cost for paid care for a PAL nationwide is $250,000. Creston is currently paying nearly $21,000/month to caregivers.
