Two years ago, Joey's muscles started "jumping" in his arms and sometimes in his chest. Within the last 6 months, his speech started to slur and that is when he began the process of getting testing to find out what is causing these symptoms. At the same time Joey and family moved to Southern California so he could continue to work and make his commute by car only - instead of an airplane each week. Once settled into SOCAL in March of this year (2018), he met with a doctor at UCLA that confirmed the diagnosis of ALS. This is a lot of information to take in, but the "average life span" once diagnosed is between 2 and 5 years.
Fast forward to now, and his muscles continually jump - called fasciculations - always in his arms and chest, and now has moved to his face, neck and often his legs. The way it is explained to us is that his motor neurons are firing continually because some have died, and the live ones are trying to bring the dead ones back to life. This obviously wears out the good ones, and eventually, he will lose all movement in his arms and legs. His speech and throat are affected as well. His cognitive ability is not impaired, and he suffers only the physical and psychological effects associated with the condition.
Joey's list of medications is extensive and includes but is not limited to:
Radicava: The first FDA approved (5/2018) medication which alone cost approximately $146,000 annually.
Nuedexta: helps with emotional control related to neurological disorders. This medication costs $1,154.00 60 capsules or $577.00 monthly.
Riluzole: ALS Treatment. $1200 monthly.
These are just medication costs that are compounded by the need for specializes doctors, nurses, treatment facilities travel, and concern of continued ability to generate income.
Thank you for your time and consideration of contributing to this fund to assist with Joey Harpst's treatments.
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