Don Sladek has Corticobasal Syndrome (CBS). We believe Gosuranemab has improved his quality of life.
08/09/2023
If anyone with Corticobasal Syndrome or PSP was in the United States military, you need to see if the PACT-Act applies to you. If you are unsure, file the “intent to file” form, which will preserve your claim date back to August 2022.
The PACT Act is a new law that expands VA health care and benefits for Veterans exposed to burn pits, Agent Orange, and other toxic substances. The PACT Act adds to the list of health conditions that we assume (or “presume”) are caused by exposure to these substances. This law helps us provide g...
11/12/2022
Please share this story on your social media sites. Our goal is that Biogen would start manufacturing Gosuranemab again or allow another company to do so.
My name is Chavonne Sladek, and I would like to share with you my husband, Don Sladek, and Tom and Wendy Thompson. Their Military Service and Civilian Work Careers Don served honorably in the U.
10/31/2022
We are hopeful the PACT-Act will be the catalyst to change the way neurodegenerative disorders are researched, funded, and treated for all patients. We believe ’s in coordination with clinical care should be reevaluated.
10/31/2022
So often, patients with Corticobasal Syndrome have difficulty with innovative problem-solving. We believe Biogen's Gosuranemab and Don's overall care plan with his neurologist have allowed him to function at this level. Don is in year 8 of this disease, and we are still finding joy in the simple pleasures of pumpkin carving.
10/31/2022
We are excited to share Don's journey again. Please check back with us as we share his story and hopefully offer hope to other patients and their families with Corticobasal Syndrome.
06/21/2021
7 years ago on Father’s Day, Don fell with a resounding thud that would forever change his life and eventually lead to a diagnosis of . The prognosis was bleak. We were fortunate to be able to enroll in UCSF’s trial with ’s . The medication may not be a cure, but it has vastly improved the quality of his life. We would like to send our love to all the fathers who are scientists, doctors, patients, caregivers, families and friends. Happy Father’s Day!
WASHINGTON, D.C. — Rep. Mike Gallagher (R-WI) today joined Reps. Mike Quigley (D-IL), Bruce Westerman (R-AR), and Eric Swalwell (D-CA) in introducing the bipartisan, bicameral Promising Pathways Act. The bill would create a means for FDA to streamline provisional approval for drugs that may treat ...
05/16/2021
If you know any NFL players, please have them participate!
A new study led by Boston University School of Medicine and UCSF researchers has been awarded a $460,000 grant by the National Institute of Neurological Disorders and Stroke, which is part of the National Institutes of Health (NIH), to study the effectiveness of brain imaging in hopes of detecting Chronic Traumatic Encephalopathy (CTE) in living people. Currently, CTE can only be diagnosed after death. The Concussion Legacy Foundation is leading recruiting for the FIND-CTE study.
Check out this flyer for more information and to see if you qualify for the study. If you are interested and think you might be eligible, contact Karen Smith at karen.smith@ucsf.edu if you’d like to be scanned at the University of California, San Francisco or Julia Culhane at jculhane@bu.edu to participate at Boston University.
04/21/2021
Frontotemporal dementia (FTD) is a progressive, neurodegenerative condition. It is the most common cause of dementia under age 60 years. FTD generally impacts the parts of the brain involved with behavior, language and executive functioning (planning, organization). Other areas can be impacted, incl...
03/01/2021
The BRAIN Conference 2021 is a conference to aid the Guarantors of BRAIN's mission to promote teaching, education, and neurological research
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I’m Chavonne Sladek, and I’m Don Sladek’s wife. Don is a Vietnam Era Veteran who was stationed in Southeast Asia and proudly served his country. He was also employed at Edwards Air Force Base's Rocket Propulsion Laboratory in the area of research and development. We are not scientists, doctors, or researchers; we are just regular people dealing with a terminal diagnosis called Corticobasal Syndrome (CBS). We are usually a private couple, but we are now compelled to share our unique story.
Don participated in a Phase I Clinical Trial called the TauBasket. He was given an infusion every 28 days. The medication that he was given was manufactured by Biogen, and called BIIB092, Gosuranemab. The positive changes in Don were remarkable and all clinically verified through the University of California, San Francisco, and the University of California, Los Angeles.
Biogen was using their medication BIIB092, Gosuranemab, in three concurrent clinical trials. Their goal is to manufacture a drug that will help Alzheimer’s patients: that is their money maker and where they will reap billions of dollars on the open market, and recoup the cost of trials. Unfortunately Alzheimer’s is hard to unlock.
For many years, amyloid plaques were seen to be the cause of Alzheimer’s and all research was focused on that. Currently, the research focus has shifted to tau tangles, but it is hard to isolate that in Alzheimer’s. There are two diseases that are believed to be a straight tauopathy. Progressive Supranuclear Palsy (PSP) is rare, but has a significant population where you could test different drugs, and Don’s disease, Corticobasal Syndrome (CBS) which is much rarer.
Biogen is currently testing their drug BIIB092, Gosuranemab in a TANGO trial that has 654 patients and is in Phase II. They were also testing the drug with PSP patients in a PASSPORT trial; unfortunately, that trial failed to meet their end goals. Don was participating in the TauBasket trial with 22 patients, of which 8 have CBS. Because the PASSPORT trial failed, Biogen abruptly terminated access to their medication in the TauBasket trial.
Don’s disease is terminal. There is no other medication available. Biogen is his only hope. We have tried to access the drug under the Right-To-Try Act and Biogen has repeatedly denied him the medication.
Our hope is to create an awareness of his situation, and that Biogen will allow him access to their medication. We ask that you saturate social media with the following hashtags:
