- Joined
- Nov 5, 2009
- Messages
- 14,707
- Reason
- Lost a loved one
- Diagnosis
- 00/0000
- Country
- US
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- WA
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- Seattle
Posting this public data separately from the current RCH4 thread as it may explain why controlled trials are doubtful as per today's posts, and provide some history. I'm not going to make this an open thread as there is enough rancor in the other RCH4 thread. For more links or clarification -- I'm trying to be concise -- please send me a message.
For the record if you don't know me, much of what I post to try to help make life and death better in ALS is not in textbooks. I'm not the Establishment attacking the new kid on the block. I donate to no ALS groups apart from this one.
As supporters here have stated, RCH4 is a peptide out of the UK. So it is easy to find in the FDA orphan drug listings for ALS as "NDX peptides" with a UK sponsor.
In 2007, Dr. Yvonne Pambakian, a physician and co-owner of the company, NeoDiagnostic Research, listed as the sponsor of "NDX peptides," injected her 22-year-old sister, Yolanda Cox, with an unapproved drug, “B71,” invented by their mother, the other owner, after mistakenly diagnosing her with a disease (PCOS) she didn’t have. Ms. Cox died four days later when her life support was turned off.
A subsequent hearing in 2009 found Dr. Pambakian responsible for her sister’s sudden death. After another hearing and consideration of criminal charges, Dr. Pambakian’s medical license was revoked in 2011.
Her mother/company co-owner, pathologist Dr. Arpi Matossian-Rogers, has been granted two patents using the same disease theory as the injected drug, that mention ALS and B71. The latest one was granted in 2016.
The for-profit company named on the patents and news accounts about Ms. Cox, Amro Biotech, is still active, with Drs. Pambakian and Rogers listed as majority owners.
I have attached the spreadsheet showing the orphan ALS compounds listed by the FDA. They are listed whether or not they have ever submitted safety or efficacy data, that would be required for approval.
You can also use the database to run searches to see what's new on the list.
Best,
Laurie
For the record if you don't know me, much of what I post to try to help make life and death better in ALS is not in textbooks. I'm not the Establishment attacking the new kid on the block. I donate to no ALS groups apart from this one.
As supporters here have stated, RCH4 is a peptide out of the UK. So it is easy to find in the FDA orphan drug listings for ALS as "NDX peptides" with a UK sponsor.
In 2007, Dr. Yvonne Pambakian, a physician and co-owner of the company, NeoDiagnostic Research, listed as the sponsor of "NDX peptides," injected her 22-year-old sister, Yolanda Cox, with an unapproved drug, “B71,” invented by their mother, the other owner, after mistakenly diagnosing her with a disease (PCOS) she didn’t have. Ms. Cox died four days later when her life support was turned off.
A subsequent hearing in 2009 found Dr. Pambakian responsible for her sister’s sudden death. After another hearing and consideration of criminal charges, Dr. Pambakian’s medical license was revoked in 2011.
Her mother/company co-owner, pathologist Dr. Arpi Matossian-Rogers, has been granted two patents using the same disease theory as the injected drug, that mention ALS and B71. The latest one was granted in 2016.
The for-profit company named on the patents and news accounts about Ms. Cox, Amro Biotech, is still active, with Drs. Pambakian and Rogers listed as majority owners.
I have attached the spreadsheet showing the orphan ALS compounds listed by the FDA. They are listed whether or not they have ever submitted safety or efficacy data, that would be required for approval.
You can also use the database to run searches to see what's new on the list.
Best,
Laurie