Dear Organizations and Charities,
As Don and I have walked, lumbered, and crawled through the maze of a clinical trial, we have learned many things. First and foremost, we learned that a Phase I trial could show efficacy, and for that, we will be forever grateful. Second, we learned how rare it is to have a basket trial, and because Dr. Adam Boxer at the University of California, San Francisco, was willing to take a chance on this group of cohorts, Don was given a miraculous year.
We have also undoubtedly learned that we are all alone. We have reached out to many of you through your “contact us” button on your websites and Facebook groups, and we have received the gamut of form letters, to the placating, “I feel your pain” response, and even no response at all. I don’t know which one frustrates me more!
Personally, I believe criticism without a solution is equally frustrating. So, let me offer some solutions. If a clinical trial is proven to be efficacious for even one patient, and the pharmacological company is still manufacturing the drug, require that they allow access to those that it’s proven to benefit. Let me be clear: These drug companies will make millions, if not billions of dollars off of the volunteers who have tested their drugs. It is not unreasonable to ask them for that medication while they are still manufacturing it.
You are not offering clinical trials that support Corticobasal Syndrome, and in fact, your trials specifically exclude them. Be transparent as to what diseases you are supporting. We will not be donating to your groups in the hope that you may at “some time” include this rare disease. Have a specific button and fund for this group or be honest and say that you are not.
And in case this is too ambiguous, let me emphatically state where the problem lies with the following groups and what an acceptable response would be:
Right-To-Try Act leads everyone back to the Goldwater Institute. We have called the Goldwater Institute and left a message. We have sent an email through their contact button. We have not received a response to either message.
An Acceptable Response: We will follow through with Biogen and talk to an actual person and see where the problem may be.
The Tau Consortium - They actually funded part of the TauBasket Trial, and for this reason, they have my deepest gratitude! But then they didn’t follow through. We begged for them to intercede with Biogen through their contact button and received no response. We also asked Dr. Stephanie Devaney to contact them on our behalf. She talked to someone on the phone who said they would respond; nothing. She messaged them through their contact button, and still no response.
An Acceptable Response: We will contact Biogen and remind them that the life-blood of their medication trials comes from patients who are willing to put their lives at risk, and we will advocate for Don to get the medication.
CurePSP - Biogen halted the PSP PASSPORT trial on December 13, 2019. We notified the CurePSP foundation on December 17, 2019, and reminded them that Don’s trial was different and was the TauBasket Trial. We received the placating, “Thank you for sharing.” When I responded, I was told that Dr. Golbe believed Don’s “terrific improvement was maybe due to an improvement in care for his medical condition.” I reiterated no medication had been added or changed throughout the trial. Once again, I got the placating, “we all have high hopes for the clinical trials,” and “Dr. Golbe is interested in hearing how he does after discontinuing the infusions.” REALLY?? Dr. Golbe, maybe someone can stop your lifeline, and you can let me know how that works for you??
An Acceptable Response: We will be in contact with Biogen immediately. We will put every resource we have into finding out why this medication worked for Don and how we can translate that information into the CBS community. We will do all we can to explore what is happening in his unique case, and continue to make sure Don has access to the medication while they are still manufacturing it.
Michael J. Fox Foundation states their research strategy is that “much work remains to bring patients new and improved treatments for Parkinson’s and related parkinsonisms.” They say, “the process of translating these early-stage findings into proven and practical treatments is slow and inefficient. Translation requires a laser-like focus on chaperoning the most promising findings along the pipeline toward clinical trials…” We begged for you to intervene on Don’s behalf. We have given you a trial and a medication that for the first time in any patient with Corticobasal Syndrome shows promise, and your placating response is, “Thank you for taking the time and for sharing your experience with us,” and that you do not advocate for the individual person.
An Acceptable Response: Thank you for bringing to our attention a trial that shows promise. We realize that the key to finding a cure will come from verified clinical trial data, and you obviously participated in one that has respectable scientific rigor. We believe that continuing with medication that is working has tremendous value to the research community, and we will begin a discussion with Biogen immediately.
For all organizations and charities, you all have a prominent “Donate Now” button on your pages. You want everyone to be a part of “your team.” You want us all to subscribe to the cause of the month and wear a ribbon that validates your specific disease. Heck, we bought into it too. We arranged our living trust to support these causes, but no longer. We will not support these foundations and the way they are currently being run. You clearly want people to donate to your causes, but dare I ask if you are honestly interested in finding a cure?
I do not NEED you to validate my feelings. I NEED action, and I NEED it now. We have proof that Biogen’s medication BIIB092, Gosuranemab, has remarkably changed Don’s life. Since he has been denied access to the medication, he has declined 20-25% in a six month time period. Without this medication, he will die, plain and simple. WE NEED ACTION, and WE NEED IT NOW!
Cordially,
Chavonne Sladek
As Don and I have walked, lumbered, and crawled through the maze of a clinical trial, we have learned many things. First and foremost, we learned that a Phase I trial could show efficacy, and for that, we will be forever grateful. Second, we learned how rare it is to have a basket trial, and because Dr. Adam Boxer at the University of California, San Francisco, was willing to take a chance on this group of cohorts, Don was given a miraculous year.
We have also undoubtedly learned that we are all alone. We have reached out to many of you through your “contact us” button on your websites and Facebook groups, and we have received the gamut of form letters, to the placating, “I feel your pain” response, and even no response at all. I don’t know which one frustrates me more!
Personally, I believe criticism without a solution is equally frustrating. So, let me offer some solutions. If a clinical trial is proven to be efficacious for even one patient, and the pharmacological company is still manufacturing the drug, require that they allow access to those that it’s proven to benefit. Let me be clear: These drug companies will make millions, if not billions of dollars off of the volunteers who have tested their drugs. It is not unreasonable to ask them for that medication while they are still manufacturing it.
You are not offering clinical trials that support Corticobasal Syndrome, and in fact, your trials specifically exclude them. Be transparent as to what diseases you are supporting. We will not be donating to your groups in the hope that you may at “some time” include this rare disease. Have a specific button and fund for this group or be honest and say that you are not.
And in case this is too ambiguous, let me emphatically state where the problem lies with the following groups and what an acceptable response would be:
Right-To-Try Act leads everyone back to the Goldwater Institute. We have called the Goldwater Institute and left a message. We have sent an email through their contact button. We have not received a response to either message.
An Acceptable Response: We will follow through with Biogen and talk to an actual person and see where the problem may be.
The Tau Consortium - They actually funded part of the TauBasket Trial, and for this reason, they have my deepest gratitude! But then they didn’t follow through. We begged for them to intercede with Biogen through their contact button and received no response. We also asked Dr. Stephanie Devaney to contact them on our behalf. She talked to someone on the phone who said they would respond; nothing. She messaged them through their contact button, and still no response.
An Acceptable Response: We will contact Biogen and remind them that the life-blood of their medication trials comes from patients who are willing to put their lives at risk, and we will advocate for Don to get the medication.
CurePSP - Biogen halted the PSP PASSPORT trial on December 13, 2019. We notified the CurePSP foundation on December 17, 2019, and reminded them that Don’s trial was different and was the TauBasket Trial. We received the placating, “Thank you for sharing.” When I responded, I was told that Dr. Golbe believed Don’s “terrific improvement was maybe due to an improvement in care for his medical condition.” I reiterated no medication had been added or changed throughout the trial. Once again, I got the placating, “we all have high hopes for the clinical trials,” and “Dr. Golbe is interested in hearing how he does after discontinuing the infusions.” REALLY?? Dr. Golbe, maybe someone can stop your lifeline, and you can let me know how that works for you??
An Acceptable Response: We will be in contact with Biogen immediately. We will put every resource we have into finding out why this medication worked for Don and how we can translate that information into the CBS community. We will do all we can to explore what is happening in his unique case, and continue to make sure Don has access to the medication while they are still manufacturing it.
Michael J. Fox Foundation states their research strategy is that “much work remains to bring patients new and improved treatments for Parkinson’s and related parkinsonisms.” They say, “the process of translating these early-stage findings into proven and practical treatments is slow and inefficient. Translation requires a laser-like focus on chaperoning the most promising findings along the pipeline toward clinical trials…” We begged for you to intervene on Don’s behalf. We have given you a trial and a medication that for the first time in any patient with Corticobasal Syndrome shows promise, and your placating response is, “Thank you for taking the time and for sharing your experience with us,” and that you do not advocate for the individual person.
An Acceptable Response: Thank you for bringing to our attention a trial that shows promise. We realize that the key to finding a cure will come from verified clinical trial data, and you obviously participated in one that has respectable scientific rigor. We believe that continuing with medication that is working has tremendous value to the research community, and we will begin a discussion with Biogen immediately.
For all organizations and charities, you all have a prominent “Donate Now” button on your pages. You want everyone to be a part of “your team.” You want us all to subscribe to the cause of the month and wear a ribbon that validates your specific disease. Heck, we bought into it too. We arranged our living trust to support these causes, but no longer. We will not support these foundations and the way they are currently being run. You clearly want people to donate to your causes, but dare I ask if you are honestly interested in finding a cure?
I do not NEED you to validate my feelings. I NEED action, and I NEED it now. We have proof that Biogen’s medication BIIB092, Gosuranemab, has remarkably changed Don’s life. Since he has been denied access to the medication, he has declined 20-25% in a six month time period. Without this medication, he will die, plain and simple. WE NEED ACTION, and WE NEED IT NOW!
Cordially,
Chavonne Sladek
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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 |
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