Support Steven's Fight Against Friedreich's Ataxia

After having balance and coordination issues for many years I was diagnosed with a rare hereditary neuromuscular disease called Friedrichs Ataxia. My older sister Becky had the same illness that started when she was just 10 years old. She passed away in 2015 due to complications with her heart, due to Friedrichs Ataxia.

Friedreich's ataxia is a rare, inherited disease. It damages the spinal cord, peripheral nerves, and the cerebellum part of the brain. It also leads to heart problems. This disease tends to develop in children and teens. It slowly gets worse over time. Unsteady, awkward movements and a loss of feeling due to nerve injury develop as the disease gets worse. People with this disorder may have other health problems, such as diabetes and heart disease, along with nervous system symptoms

Thankfully I developed late onset Friedrichs Ataxia. So I was able to be relatively healthy into my late 20's. Since then though it has been a grind. I went from playing golf to a wheelchair in a few short years.

In the past year the FDA approved the first ever treatment for Friedreich's Ataxia.

The only FDA-approved medication for Friedreich's ataxia is omaveloxolone, Skyclarys

Omaveloxolone is an oral medication that helps to slow the progression of Friedreich's ataxia symptoms. It works by activating the body's antioxidant system, which can protect nerve cells from damage. They say that by taking this medication the symptoms will improve/lessen by 20% The number will only increase over the years I hope!

However there always seems to be a catch. This medication is not covered by insurance. After applying for financial assistance the medication is still going to cost $526/month.

I have been very hesitant to ask for help but for something with so much potential I won't let pride get in the way. I wanted to fundraise to get 6-9 months into the medication and I'll figure it out from there.

Thanks for taking the time to read this.

cheers

Steven Barbush

https://www.businesswire.com/news/home/20230228006450/en/Reata-Pharmaceuticals-Announces-FDA-Approval-of-SKYCLARYS-Omavaloxolone-the-First-and-Only-Drug-Indicated-for-Patients-with-Friedreichs-Ataxia