The Courtney Project 501(c)3

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About the Disease

Understand the risks and effects of PML and the JC virus with help from The Courtney Project 501(c)3 in Orlando, Florida. Below are the definitions of PML and JC virus.

What Is PML?

Progressive Multifocal Leukoencephalopathy (PML) is a debilitating disease of the central nervous system. It is caused by the John Cunningham polyomavirus (JC virus or JCV). While generally harmless, JCV is dangerous for people with weak immune systems.
PML occurs when the JC virus is re-activated while lying dormant within our bodies. In general, individuals with PML have a mortality rate of up to 50% in the first few months.

What Is the JC Virus?

JCV is genetically similar to the BK virus and SV40. It behaves similar to common viral infections like herpes and chickenpox. This type of infection may be passed easily from person to person. When you get chickenpox, the virus never leaves your body. Later on in life, it may flare up again and cause a condition called shingles.
When you introduce medications that weaken the immune system, your body no longer fights off viruses the way it used to. This gives the JCV a chance to become active. Once active, it can cross the blood-brain-barrier and cause PML, leading to severe damage of the white matter of the brain and death in some cases.
We can easily test to see if you have been exposed to JCV. This tells us if you are at risk for developing PML. A blood test called the JCV Antibody ELISA test is routine.

We Need Your Participation

The Courtney Project 501(c)3 is honored to partner with Inhibikase Therapeutics in a study of patients who survived PML. The goal of the study is to assess markers of infection in patients who survived PML to look for common links between patients who have endured this disease.

Inhibikase has developed simple diagnostic tests to determine if you carry an active JCV infection. This can be measured from a collection of a single urine sample that can be sent to your home and returned to the company at our expense.

The company would also like to learn a little information about your disease. This includes the length of time you were on treatment before PML was diagnosed, your age and gender, and the length of time since your PML was diagnosed.
The company is interested in having the JCV antibody index measured. This can be obtained from a simple blood test, which will be performed by your treating physician and released to Inhibikase Therapeutics with your permission. Your results will be included in a confidential database being compiled to correlate certain markers of viral infection with PML disease.

Aquasia U. Johnson

TCP Global Fundraising/Outreach Director