Treating Corticobasal Syndrome (CBS)
The story of Don Sladek's journey with CBS
I’m Chavonne Sladek, and I’m Don Sladek’s wife. Don is a Vietnam Era veteran stationed in Southeast Asia and proudly served his country. We are not scientists or doctors; we are just regular people dealing with a terminal neurodegenerative disease called Corticobasal Syndrome (CBS). We are usually a private couple, but we are now compelled to share our unique story. It involves overcoming obstacles that affect all patients who have to go through the pharmaceutical industry to try and save their lives.
What is Corticobasal Syndrome?
Corticobasal Syndrome (CBS) is the clinical diagnosis of Corticobasal Degeneration (CBD), which is finalized at autopsy. CBS has no known cause, treatment, or cure; and is a rare brain disease. It is also a four-repeat tauopathy (4R-tau). It affects nerve cells that control walking, balance, mobility, vision, speech, and swallowing. It is terminal, and the life expectancy is 6-8 years. Don is in year eight, and time is of the essence.
Why is this Situation Significant?
The Treating Corticobasal Syndrome website was created after Don Sladek courageously and successfully participated in a Phase I trial with Biogen’s medication: BIIB092, Gosuranemab. Don, with the help of his neurologist, Dr. Yvette Borderlon from the University of California, Los Angeles, was given single patient access. Biogen is no longer manufacturing the drug and he will be out medication in June of 2023. We believe with the passage of the Veteran's PACT-Act this medication could benefit other veterans and warrants further study.
What is the PACT Act?
In August 2022, Congress, with a large bipartisan majority, passed, and the President signed the PACT-Act, a new law that expands VA health care and benefits to veterans exposed to toxic substances. Don served in the United States Air Force and was stationed at the Royal Thai Air Force Base in Udorn, Thailand, during 1974-75. One of the sections of the Act, Title V, provides funding for research. We believe Gosuranemab, as an important component of a care plan for Parkinsonsims has demonstrated some success and could help other veterans suffering from related neurodegenerative diseases.
How to Help
We believe the Passage of the PACT-Act demands research and treatment for our Veterans. Currently, there are no treatment options for Corticobasal Syndrome patients and very few for those suffering from Chronic Traumatic Encephalopathy (CTE) and other neurodegenerative disorders. We believe Biogen's Gosuranemab offers the best option for our Veterans. The Veterans Administration Health Department needs to work in conjunction with Biogen to coordinate the manufacture, clinical trials, and treatment with Gosuranemab as part of a comprehensive care plan.
Photo created by Gracie Sladek, Don's granddaughter.
There are not enough words to express our gratitude to Biogen. We realize Gosuranemab is not a cure, but it has greatly improved Don's quality of life. There is no other medication that has been shown to reverse and improve any neurodegenerative disease, but this drug has shown to be efficacious when supported with Dr. Yvette Bordelon's overall plan of care for Don and has been indispensable to his quality of life. We would like to thank all of Biogen for caring deeply and working fearlessly.
Don's appreciation to Biogen after two years of Single Patient Expanded Use