Welcome!

Our Mission as the only Not For Profit Organization established for the sole purpose of increasing awareness through education and encouraging/supporting research for a cure for Progressive Multifocal Leukoencephalopathy (PML) & the JC Virus.

Reginald Todd Hewitt - Founder




Click Here to Read The Courtney Project Brochure


Click Here to Join the Map of PML and Connect with People who Share your Condition

 

 

News and Events

Monthly Garage/Rummage Sale   
Date Coming Soon

 If you would like to donate items, please drop them off at TCP Office or call to schedule pick up at 407-291-8658 . Good used, reliable cars are also welcome.

Reginald Todd Hewitt Day
November 6, 2014

City of Orlando Mayor Buddy Dyer declares this day in history as "Reginald Todd Hewitt Day" for his undying love and commitment to our community and helping to ensure a healthier world!

Read More

 

2 Shows in One Event
Saturday May 21, Doors Open at 7 PM

Featuring performances from
beaux Patrick and Steve Addona
Doors open 7PM at Downtown Credo
706 W. Smith St., College Park, FL

 
The Details

 

What is PML?

Progressive Multifocal Leukoencephalopathy is a rare and usually fatal viral disease characterized by progressive damage (-pathy) or inflammation of the white matter (leuko-) of the brain (-encephalo-) at multiple locations (multifocal). It is caused by the JC virus, which is normally present and kept under control by the immune system. JC virus is harmless except in cases of weakened immune systems. In general, PML has a mortality rate of 30–50 percent in the first few months and those who survive can be left with varying degrees of neurological disabilities. PML occurs  when the JC Virus is re-activated after lying dormant within our bodies. 

 

What is The JC Virus?

The JC virus (John Cunningham virus) is the infection that leads to PML. This virus behaves much like other common viral infections such as herpes and the chicken pox. When you get the chicken pox the virus never leaves your body, and later in life it may flare up again and cause a condition called shingles. Similarly, people who have been infected with herpes always have the virus lurking in their nervous systems. During times of stress it will become active and an outbreak ...of sores will occur, but unless an active outbreak is occurring there are no outward signs of the virus. The JC virus is fairly common, and is passed easily from person to person. However, since it’s an opportunistic infection healthy people never have any complications from it. When you introduce medications that weaken the immune system, like Tysabri does, your body no longer fights off viruses the way it used to. This gives the dormant JC virus the chance to become active. Once it is active there is a chance that it can cross through the blood-brain-barrier and cause PML. This causes severe damage to the white matter of the brain, and can even lead to death. All of that information is fairly terrifying right? Well, here’s some good news! We can easily test to see if you have been exposed to the JC virus, which tells us if you are at risk for developing PML. A blood test called the JCV Antibody ELISA test is routine. JUST ASK YOUR DOCTOR!

 

We need your participation:

TCP is honored to partner with Inhibikase Therapeutics in a study of patients who survived Progressive Multifocal Leukoencephalopathy (PML), a debilitating disease of the central nervous system caused by the JC polyomavirus (JCV). The goal of this study is to measure 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, which can be measured from 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, such as the length of time you were on treatment before PML was diagnosed, your age and gender and how long since your PML was diagnosed. The Company is also interested in having the JCV antibody index measured, which can be obtained from a simple blood test performed by your treating physician and released, with your permission, to Inhibikase Therapeutics to include in a confidential database being compiled to correlate certain markers of viral infection with PML disease.

 

Aquasia U. Johnson
TCP Global Fundraising/Outreach Director


Contact Info:
Office Phone: 407-291-8658
Mobile Phone: 407-494-4782
FundingTheCourtneyProject@gmail.com


"Throughout my lifetime I have been driven to help others obtain much-needed resources. This is why I feel so passionate about bringing awareness to this cause on a global scale. Courtney lost her voice and now we're asking you to lend her yours!"

Your Support

Please Consider giving a donation!

 
We are a 501c3 Not-for-Profit Organization, so your donation is tax deductible!
Tax ID number: EIN: 45-1497103.