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Open letter to major chemical companies (BOL-148)


Grupo CH Espana
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12 hours ago, DJ Cluster said:

really there needs to be a Worldwide online resource that diagnosed CH patients can record their treatments into, that other patients & doctors could access (AI will surely be of help if we had all the patient data)

A very dedicated fellow from somewhere in Europe (Belgium???) persisted with creating and testing a data-collection app, getting people to use it, and tracking the data. It's here: https://nobism.com/remind-collect-data/ 

In addition, some very large studies, such as the one carried out by Dr. Larry Schor and others, have surveyed people with CH and created detailed profiles of treatments and perceived efficacy.  

You can imagine the immense difficulty of getting reliable information from these gigantic efforts, given the many, many variables that need to be taken into account.  But many blessings to those who are making the effort.  

Batch (xxx) has also tracked the impact of the D3 regimen with a fairly large group of people with CH.

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On 12/2/2020 at 8:37 AM, CHfather said:

Thanks for getting back to us, Jack. So many don't.  Much appreciated.

Is this helpful at all?   "Justin Kirkland ... was recently awarded a U.S. patent for the improved synthesis of the ergoline BOL-148: useful in treating cluster headaches."  https://www.a4m.com/justin-kirkland.html#:~:text=Kirkland has earned a BS,useful in treating cluster headaches.

https://patents.google.com/patent/US20160237080A1/en

I have tried to locate this Kirkland fellow, and have called a couple of places where he is said to have worked. Good as I am at googling, I can't find him. 

As we have discussed, Drs. Halpern and Passie hold a patent related to using BOL to treat CH ("methods and kits").  https://patents.google.com/patent/US8415371B2/en

This is helpful! Thanks for the links. You have my word that I will be reaching out to Justin Kirkland this week and inquiring about his work with BOL. I have some ideas for tweaking the molecule but they may not be commercially viable- that is always the "catch," when it comes to denovo therapeutic development. Cool ideas are often unprofitable!

I apologize for not checking in more often. Lately my days have involved research on a rare neurodegenerative disorder called Pantothenate Kinase-associated Neurodegeneration. My teammates and I are working on resurrecting an abandoned program that we believe can be improved and used to give hope to the patients and families who grapple with this debilitating disease. I've also been researching motility agents for gastroparesis in Parkinson's. Neuro/CNS does not have the attention, as a therapeutic area, that I believe it needs. 

I have been discussing CH along with other disease states with my colleagues. We continue to search and have discussed BOL, as one of my colleagues had looked it over in the 2014-16' years. I am not sure if I mentioned it on here, but I had a conference call with Compass Pathways and encouraged them to develop their crystalline polymorph of psilocybin for CH. 

To the extent that I can help any of you with anything (aside from continuing the quest to bring new therapeutics to market for CH) please reach out. I left my personal info in a previous post, and will always welcome a message from a Cluster Head or advocate. 

Hope & Strength,

-JJF

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A LOT in here, including that the company is "... doing a lot of preclinical work to complete a package for an IND filing for sometime in the fall, for the full-blown phase two clinical trials for BOL-148.”

https://www.forbes.com/sites/amandasiebert/2021/01/18/betterlife-pharma-is-developing-second-generation-psychedelics-drugs-that-leave-out-the-trip/?sh=1405582f648f&fbclid=IwAR1qjwmeOl-LLa9KQyetBMeRSQpBtwKJmmpz0xxX27kFM6-1cRHmE-T5e0o

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21 hours ago, CHfather said:

A LOT in here, including that the company is "... doing a lot of preclinical work to complete a package for an IND filing for sometime in the fall, for the full-blown phase two clinical trials for BOL-148.”

https://www.forbes.com/sites/amandasiebert/2021/01/18/betterlife-pharma-is-developing-second-generation-psychedelics-drugs-that-leave-out-the-trip/?sh=1405582f648f&fbclid=IwAR1qjwmeOl-LLa9KQyetBMeRSQpBtwKJmmpz0xxX27kFM6-1cRHmE-T5e0o

I just spoke with Justin- he sold his BOL patent to Better Life.

The current status of BOL seems that it will be taken forward for treatment resistant depression. At least it will be cleared in a phase-I soon(ish) if better life raises capital.

At that point, I'd think that some cluster sufferers could enroll in their depression trials.


The caveat is that Savant HWP holds the method patents to use BOL for Cluster. If we could get them to do a deal with Better Life, things look very promising.


-J

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