TREATING CORTICOBASAL SYNDROME
  • Home
  • News
    • Video Evidence
  • How to Help
  • Messages
    • To: Family & Friends
    • To: CBS Patients & Their Families
    • To: Journalists
    • To: Physicians & Scientists
    • To: Politicians & Policy Makers
    • To: Organizations & Charities
    • To: Biogen
  • ABOUT
    • Our Story
    • About Us
    • About CBS
    • About Site
    • About Access
    • About Biogen
  • Contact Us

How You Can Help


It is truly our hope that there will one day be a foundation in which to donate; but currently there are not any doing clinical trials on Corticobasal Syndrome, and in fact they exclude CBS from trials they are doing.

We are imploring you to write a letter on Don’s behalf to the following: Biogen, your legislative representatives, financial investors, and anyone that you think may be able to draw attention to this matter.


Contact Politicians:

We ask that you write a letter from the heart; but if you are at a loss for words, the attached link below is a form letter that can be used.

Most Congressional offices have a “contact” form on their website that you can fill out. Enter your name and information on their form and cut and paste the following message into the “comments” section. Use the template below, but fill in the appropriate information based on to whom you are writing.
​
Find Your Local Officials:
https://www.usa.gov/elected-officials
Copy & Paste Letter to Political Website Message Form

To Whom It May Concern:

Don Sladek is a Vietnam Era veteran, who was stationed in Southeast Asia. We would like your help interceding on his behalf with Biogen to access the drug BIIB092, Gosuranemab.

Don was diagnosed with Corticobasal Syndrome (also known as CBS or CBD) after a fall in June 2014, by Dr. Borderlon at UCLA. The life expectancy is 6-8 years and time is of the essence.

Don was enrolled in clinical trial, NCT03658135 BIIB092 (TauBasket; Principal Investigator, Dr. Boxer). He received his first infusion in January 2019 and received one every 28 days through December 11, 2019.

There are videotaped neuro exams from August 2015, through March 2020, on Don’s website: treatingcbs.com

Don has had miraculous improvement in walking and balance, swallowing, motor skills, and cognitive abilities as a result of this medication. All of this is clinically documented.

Here is our problem:

1. Biogen’s drug, BIIB092, changed Don’s life and he is quite possibly alive today only because of it. Without it, he will degenerate and die.
2. Biogen refuses to allow access to BIIB092 due to the failure of their concurrent Progressive Supranuclear Palsy PASSPORT trial.
3. Biogen has refused to acknowledge the TauBasket, UCSF-sponsored trial. The company has not reviewed any of the data and refuses to communicate with the Sladeks or their doctors.
4. Biogen has clearly stated to Dr. Borderlon that it will not offer the drug under Compassionate Use or the Right-To-Try Act.
5. We understand that we cannot force Biogen to make a drug; however, they are currently producing it. Biogen is manufacturing BIIB092 for the TANGO Phase 2 trial for Alzheimer’s Disease, which has an estimated enrollment of 654 patients. The trial began in May 2018 and is expected to last until July 2021, with the potential for long-term extension. Evidence of BIIB092’s use can be found at:

https://clinicaltrials.gov/ct2/show/NCT03352557

Thank you for your help in urgently addressing this problem.




This text will be copied when you click the button above. Try it and paste it onto your political website!
Use Attached Letter in an Email

How You Can Help


It is truly our hope that there will one day be a foundation in which to donate; but currently there are not any doing clinical trials on Corticobasal Syndrome, and in fact they exclude CBS from trials they are doing.

We are imploring you to write a letter on Don’s behalf to the following: Biogen, your legislative representatives, financial investors, and anyone that you think may be able to draw attention to this matter.


Contact Politicians:

We ask that you write a letter from the heart; but if you are at a loss for words, the attached link below is a form letter that can be used.

Most Congressional offices have a “contact” form on their website that you can fill out. Enter your name and information on their form and cut and paste the following message into the “comments” section. Use the template below, but fill in the appropriate information based on to whom you are writing.
​
Find Your Local Officials:
https://www.usa.gov/elected-officials
Copy & Paste Letter to Political Website Message Form

To Whom It May Concern:

Don Sladek is a Vietnam Era veteran, who was stationed in Southeast Asia. We would like your help interceding on his behalf with Biogen to access the drug BIIB092, Gosuranemab.

Don was diagnosed with Corticobasal Syndrome (also known as CBS or CBD) after a fall in June 2014, by Dr. Borderlon at UCLA. The life expectancy is 6-8 years and time is of the essence.

Don was enrolled in clinical trial, NCT03658135 BIIB092 (TauBasket; Principal Investigator, Dr. Boxer). He received his first infusion in January 2019 and received one every 28 days through December 11, 2019.

There are videotaped neuro exams from August 2015, through March 2020, on Don’s website: treatingcbs.com

Don has had miraculous improvement in walking and balance, swallowing, motor skills, and cognitive abilities as a result of this medication. All of this is clinically documented.

Here is our problem:

1. Biogen’s drug, BIIB092, changed Don’s life and he is quite possibly alive today only because of it. Without it, he will degenerate and die.
2. Biogen refuses to allow access to BIIB092 due to the failure of their concurrent Progressive Supranuclear Palsy PASSPORT trial.
3. Biogen has refused to acknowledge the TauBasket, UCSF-sponsored trial. The company has not reviewed any of the data and refuses to communicate with the Sladeks or their doctors.
4. Biogen has clearly stated to Dr. Borderlon that it will not offer the drug under Compassionate Use or the Right-To-Try Act.
5. We understand that we cannot force Biogen to make a drug; however, they are currently producing it. Biogen is manufacturing BIIB092 for the TANGO Phase 2 trial for Alzheimer’s Disease, which has an estimated enrollment of 654 patients. The trial began in May 2018 and is expected to last until July 2021, with the potential for long-term extension. Evidence of BIIB092’s use can be found at:

https://clinicaltrials.gov/ct2/show/NCT03352557

Thank you for your help in urgently addressing this problem.




This text will be copied when you click the button above. Try it and paste it onto your political website!
Use Attached Letter in an Email

Treating Corticobasal Syndrome: 
Our Fight to Find a Cure for Don Sladek and other
Corticobasal Syndrome (CBS) patients


​Please use these hashtags to ​bring awareness

#TreatingCBS | #Treatment4Don | #Gosuranemab | #CorticobasalSyndrome | #Biogen | #CBS

Who Are We?


I’m Chavonne Sladek and I’m Don Sladek’s wife. We are not scientists, doctors, or researchers; we are just regular people dealing with a terminal diagnosis called Corticobasal Syndrome (CBS). We are normally a private couple, but we are now compelled to share our unique story.

What is Corticobasal Syndrome (CBS)?


It is not Parkinson’s Disease. It is a Prime of Life Brain Disease. CBS has no known cause, treatment, or cure.  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 six and time is of the essence.

What is this Site About?


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; and then was denied access to the medication. We, as well as Don’s neurologist, Dr. Yvette Borderlon from University of California, Los Angeles have applied to Biogen under the Right-to-Try Act, and Compassionate Use and have been denied four times. We are pleading for help to have Biogen revisit their policy.

Why is this Situation Significant?


The significance of Don's Sladek's experience is that he had a positive reaction to Biogen's clinical trial drug, called: Gosuranemab(B11B092). We have applied to Biogen through the Right to Try act to re-use Gosuranemab. However, Biogen has wrongfully denied Don Sladek access to the drug that helped him see progression both physically and cognitively. We are pleading with Biogen to allow Don to continue using the drug to treat his rare brain disease.

How You Can Help?


We are imploring you to write a letter on Don’s behalf to the following:  Biogen, your legislative representatives, financial investors, and anyone that you think may be able to draw attention to this matter.  We ask that you write a letter from the heart; but if you are at a loss for words, the attached link is a form letter that can be used.

It is truly our hope that there will one day be a foundation in which to donate; but currently there are none doing clinical trials on Corticobasal Syndrome, and in fact they exclude CBS from trials they are doing.

Our Mission Statement:

The mission of a clinical trial should not be forgotten; we need cures and therapies that improve the quality of lives, and it requires courageous volunteers that deserve the medication they have proven to be efficacious. Please join us in requesting that Biogen provide access of the medication BIIB092, Gosuranemab, to Don Sladek.

Resources


We have compiled individual messages to each of our visitors to provide a better understanding of our unique situation. Please read these messages that touch on topics such as:

Corticobasal Syndrome, Right to Try Act, and Biogen.

Picture
To: New Visitors


Picture
To: CBS Patients


Picture
To: Family & Friends of CBS Patients


Picture
To: Doctors & Scientists


Picture
To: Politicians & Policy Makers


Picture
To: Biogen & Big Pharma


Recent News

Picture

Treating CBS Podcast  /  Episode #1
​
Interview with Dr. Yvette Bordelon, MD, PhD (UCLA)

April 3, 2020


Picture

Blog Post  /  Infographics
​Difference Between the Terms: CBS & CBD
April 3, 2020


Picture

Blog Post  /  Perspective
​Shouldn't We Treat All Diseases Like We Treat Covid-19?
April 3, 2020


Go to Blog Page

Picture
© COPYRIGHT 2020. All rights reserved. Unless attribution otherwise noted.

THANK YOU

“I would like to thank all of you from the bottom of my heart that took the time to read this site and those that took action concerning my situation with CBS. The clinical trial has helped my quality of life. My goal has always been to help science to help others with this terrible disease. God bless and thank you all.”

​- Don Sladek

    Subscribe to newsletter

Subscribe to Newsletter

  Home  |   News  |  How to Help  |  Messages  |  About  |  Contact Us   |
Picture
  • Home
  • News
    • Video Evidence
  • How to Help
  • Messages
    • To: Family & Friends
    • To: CBS Patients & Their Families
    • To: Journalists
    • To: Physicians & Scientists
    • To: Politicians & Policy Makers
    • To: Organizations & Charities
    • To: Biogen
  • ABOUT
    • Our Story
    • About Us
    • About CBS
    • About Site
    • About Access
    • About Biogen
  • Contact Us