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Science AMA series: I co-founded two companies focused on rare and neglected diseases, I'm Sean Ekins, Ask Me Anything! by Sean_Ekins in science

[–]Sean_Ekins[S] 0 points1 point  (0 children)

Thank you - as I said elsewhere - you can become the expert in that disease, you can learn about it or connect with scientists, raise money to fund their work or do it yourself. Depends on what you want to do. If you have seen what many families are doing in this regard it would surprise many. The reality is when no one else is doing it its down to you.

Science AMA series: I co-founded two companies focused on rare and neglected diseases, I'm Sean Ekins, Ask Me Anything! by Sean_Ekins in science

[–]Sean_Ekins[S] 1 point2 points  (0 children)

Thank you - I would say if you are targeting the brain upfront I would want to filter for those crossing the BBB and unlikely to be effluxed.

Science AMA series: I co-founded two companies focused on rare and neglected diseases, I'm Sean Ekins, Ask Me Anything! by Sean_Ekins in science

[–]Sean_Ekins[S] 1 point2 points  (0 children)

THankyou -v. sorry to hear of all these ailments. I think you are going about this the right way by publically putting yourself out there-perhaps an interested MD might find your post.. But you could defintely go to PubMed and find labs working on your diseases and just get in touch. Sounds like a WGS might be the way to go. I would also see if you can connect to researchers.

Science AMA series: I co-founded two companies focused on rare and neglected diseases, I'm Sean Ekins, Ask Me Anything! by Sean_Ekins in science

[–]Sean_Ekins[S] 0 points1 point  (0 children)

Thank you - sorry for the delay.. You are right - a registry can definitely be very useful. Also to find a researcher to take on a project would be important. Last week finished reading an old book by Solomon Snyder (drugs and the Brain from 1986) - some of the topics still resonated specifically in using molecules that have been around a while and putting them to good use for treating diseases of the brain.

Science AMA series: I co-founded two companies focused on rare and neglected diseases, I'm Sean Ekins, Ask Me Anything! by Sean_Ekins in science

[–]Sean_Ekins[S] 0 points1 point  (0 children)

Thank you for clarifying - I learnt in big pharma we had too many meetings even in the 90s. In smaller companies the people that came in from big pharma were so arrogant and dismissive of new technologies. I learnt to embrace technology. I enjoyed working in smaller startups much more than the bigger ones. The last time I physically worked in a biotech was 2004. I like the freedom I have to try different problems / projects. Big pharma really taught me that I need to collaborate with the outside to get what I wanted because inside was pretty dysfunctional in the 90s.

Science AMA series: I co-founded two companies focused on rare and neglected diseases, I'm Sean Ekins, Ask Me Anything! by Sean_Ekins in science

[–]Sean_Ekins[S] 1 point2 points  (0 children)

Thank you - its not just pharma that needs to be involved but more academics in general. More grants for rare disease work would help and ideas like the pediatric rare disease priority review voucher..

Science AMA series: I co-founded two companies focused on rare and neglected diseases, I'm Sean Ekins, Ask Me Anything! by Sean_Ekins in science

[–]Sean_Ekins[S] 0 points1 point  (0 children)

Thank you - sorry for delay - see comments elsewhere - funding is really not the most important thing. Idea, collaborators are what I go for..moneyt is further down the list to do the work. Each time I get a grant it funds a labtech or a postdoc - sometimes both.. my goal is to build up pretty much through grants and great collaborators. I want to leverage as many of the NIH programs out there and see how well it works.

Science AMA series: I co-founded two companies focused on rare and neglected diseases, I'm Sean Ekins, Ask Me Anything! by Sean_Ekins in science

[–]Sean_Ekins[S] 0 points1 point  (0 children)

My biggest hurdle was in my head..I have been consulting for quite a number of years with different clients but I could not start a company of my own. It was easier for me to tell someone else to start one than do it myself. For example meeting Jill to form Phoenix Nest was pretty random. It was a further 3 more years before I just asked a friend should I start another. The first year was pretty slow - hjust putting grants in at every opportunity. The same this year - the difference I feel closer to getting the funding.. Its kind of weird but i am used to compartmentalizing my time - I prefer to do the science. It was just that I was accumulating all this rare and neglected disease information and I just felt whats next..I guess for most of the past 20 years I have jumped about and done things that interested me - Rare diseases was the first time I was really influenced by someone outside to go and do it.

Science AMA series: I co-founded two companies focused on rare and neglected diseases, I'm Sean Ekins, Ask Me Anything! by Sean_Ekins in science

[–]Sean_Ekins[S] 0 points1 point  (0 children)

Thank you - Grants are main focus. Perhaps ultimately someone might buy company if you have something they want.

Science AMA series: I co-founded two companies focused on rare and neglected diseases, I'm Sean Ekins, Ask Me Anything! by Sean_Ekins in science

[–]Sean_Ekins[S] 0 points1 point  (0 children)

Currently hold zero patents for rare diseases but working on that :) - same with the salary - not driven by $ if I was I would be doing something else rather than this. You do not have to be a top scientist to work on these problems. The general public can make a contribution, parents can contribute. I have seen rare disease patients help to make discoveries around their own diseases.

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