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 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.
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Find Your Local Officials:
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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!
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 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:
|
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!
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
