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JF_RegenicaBio

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JF_RegenicaBio last won the day on August 28 2019

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  1. 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
  2. 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 th
  3. Hi All- Wishing health and wellness to all of my clusterhead friends. I've assumed control of a pharma company with decent resources and a good management team. Please message, email, or call me if you know of any promising phase-I drugs that can be used to help clusterheads. I'm still attached to this community and still holding out hope to develop a good addition to the standard of care. NOTE: If ANYONE can track down BOL-148 and the patents, please let me know, ASAP! -J
  4. Hi Vipul and my cluster friends- I haven't been posting on the forums but have been incredibly active. I am typing this response while muted on a conference call (our secret), and have been working around the clock, nights and weekends included. I have joined a new company with great resources and brilliant hard working scientists, and we are pushing hard to develop a COVID-19 therapy that is both safe and effective. We have 7 portfolio companies across therapeutic indications but have all temporarily shifted focus to push forward in the midst of this global health crisis. The pr
  5. Read articles like those with a grain of salt- the journalists sometimes are the ones who are getting rich off of us (and our emotions). Also, here is how I see the money thing: As long as they bring us good medicines, we can work together to compensate the innovators. (And when a price gets too high, we can work together to get them lowered). I don't know about the billionaire couple or any switch from non-profit to for-profit, but I do know that Compass seemed aboveboard when we spoke (although not too interested in Cluster). We planned to follow up in 3 months, but it does seem like
  6. We must be on same wavelength- I was just about to post a small update. Although I have no updates regarding BOL-148, I have gone back and forth with a company called Compass Pathways. There is an NDA in place, so can't disclose anything much. Will say that we are scheduled to chat more extensively on 9/18. I will also say that they have been developing psilocybin for use in treatment resistant depression and have enrolled a Phase IIb. I have heard psilocybin could be very promising for a certain group of patients. Will see what can be done.
  7. Thank you for the welcome. I really hope to attend a CH conference in SoCal sometime soon. I have alot to learn as a rare disease advocate but can sense that the community here is really something- I hope take any lessons learned to other communities of those w/rare disorders who don't yet have infrastructure/unification. Money is the top impediment to getting drugs to patients. It feels as if all I do is fundraise so I understand/empathize w/ the struggle. Very promising NMDA partial agonist (like ketamine, without psychotomimetic effects). Replaced by Apimostinel which is u
  8. I have read the compilation and have shared with friends. Unbelievable and heartbreaking. Very grateful that you shared. I really hope we can figure out a way to facilitate some kind of access program to the 5ht2a drugs that seem to work in CH. Dealing with Sched-I is difficult but nothing is impossible. I reached out to the CEO of Savant HWP who presumably now holds the BOL Patents, and will hopefully hear back from him. In meantime- does anyone have experiences with the newly approved Alcanezumab-gnlm (Emgality)? I would love to hear. Hopefully it provides some with relief.
  9. Thank you for that- I look forward to reading/learning more from the experiences that have been shared on this forum. I had the chance to speak by phone with Bob earlier today, and he seems like a great advocate (one with alot of insight and years of experience). He shared some really interesting stories with me. Some we laughed about, but others left me feeling really frustrated over the unique challenges faced by the CH community (like about those who lack access to sustainable prophylactic options and also score high on tests for PTSD, or elderly CH patients who struggle to access oxy
  10. Thank you all for the responses and welcome. I am in touch with Bob and setting up a call to discuss the current status of the 2-Bromo-LSD program. At the very least, perhaps I can try and hold this new company accountable alongside you all and analyze things with you as they progress. There are a number of reasons why CH is personal to me and I'm happy to share more by pm. Broadly- I strive to be an advocate for those with debilitating disorders that have been abandoned by big pharma. My mother suffers from a serious disease with no adequate treatments, with a similar patient population
  11. Apologies for bumping an old thread, but want you all to know that CH has become personal to me. I am the CEO and founder of a biopharmaceutical company in San Diego, and, although the company is primarily engaged in developing antidotes for the U.S. Military+Emergency Preparedness, I am a strong advocate for underserved patient populations (where traditional pharma is unable or unwilling to help). We may have access to resources and partners that can push this compound to a place where you all can access it safely, affordably, and reliably. I'd love to continue the dialogue and see where I/we
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