Help Rory Fight ALS

Video Caption: Hello my name is Rory Hart I am 22 years old and I was recently diagnosed with juvenile amyotrophic lateral sclerosis also known as Juvenile ALS, ALS, or Lou Gehrig's disease.

for those of you who don't know juvenile ALS is an incurable type of motor neuron disease with an onset before the age of 25. it affects less than 1 in a million people in the U.S. The way it works is through something called motor neuron degeneration.The working theory is that through a build-up of toxic proteins (or prions) in the central nervous system (so the brain and spinal cord) an integral part of the nerve is damaged. If you imagine the nerves in your body as wire the insulating rubber is called the myelin sheath it is responsible for senses like touch and feeling while the copper conductor is your axon which is responsible for movement. In ALS That inner core is progressively damaged over the years leading to paralysis, and an eventual inability to breathe as well as eat which leads to death

I first noticed symptoms in May of 2023 when training jiu-jitsu, I was nearly incapable of running and I would very easily lose balance. It slowly progressed to the point where my feet would drag and catch on the floor when walking leading to a lot of falls. I am now currently at a point in which i can barely walk a few feet with a cane before my legs give out entirely.

While ALS is incurable there are treatments that help slow progression. One of these treatments is called Radicava.

so... Radicava is a relatively new medication shown to slow motor neuron degeneration by around 33%. The catch is that a 30-day supply of this medication costs over 8000 dollars before any state or federal assistance. while I am eligible to receive federal and state insurance to help cover some of these costs. I am currently looking at a timeline of roughly 6 months before I have access to any of these assistance programs.

I am currently trying to raise 69,000 dollars because terminal illness is very expensive and 69 is very funny.

I would be using this money for medications, treatments, transportation, and in the near future a new wheelchair.

If you were to google the average Prognosis of a person with ALS is 2-5 years, it varies a lot from person to person depending upon the age of onset as well the locations in which the disease is initially affected. There are many cases of young people living 10 years or more. The ALS Association currently has a goal to make this disease liveable by 2030 and considering the recent breakthroughs in medicine as well as technology my current aim is set on being saved by the bell so to speak.

My goal for the future is to raise awareness and funding for the research of ALS through the ALS Association. I would be doing this through YouTube videos, gaming challenges, and Twitch live streams.

If you have any questions or comments you can reach me through my email in the bio thanks guys wish me luck!

All proceeds from this go-fund-me will be used to purcuase medications to assist Rory Hart with his disease. Any additional funds will be put toward medical bills and or living expenses.

ALS Research donations: https://donate.als.org/give/287064/#!/donation/checkout?c_src=jumppage

Email: [email redacted]

Twitch: https://www.twitch.tv/lemonjoebro/about