I have a tendency to agree to other peoples good ideas to do things and then it catches up with me. You know that feeling of massive over commitment.
Well I started to say NO a lot more frequently. I say no to all manner of requests to answer questionnaires, review for journals from publishers I never heard of, present at different kinds of unrelated conferences in China (although I really would like to go one day). I still say yes to anyone asking me questions, whether its students wanting career advice, friends needing references, strangers wanting reprints etc. Rare disease parent advocates are the top of my YES list. I have plenty of time for them because they have immense challenges to raise funds and convince other scientists to do the research that one day may help their child. Their approach has been a revelation to me to the extent that I have had to put aside other academic pursuits. I have let 2 book proposals languish, along with several papers I have always wanted to work on. Well I hope I have time in the future to get back to these projects. My focus, if I have any, is rare and neglected diseases. the latter because they are killing millions needlessly and the former because there are so many of them with huge gaps in our knowledge and both severely lack funding.
A few months a go Jim Radke at Rare Disease Reports asked if I would like to blog for them on occasion. Now I have a lot of time for Jim because he is very generous at highlighting all different groups involved in rare diseases and the website has a wealth of info. He is also a super nice fellow who told me I should do more of what I do on rare diseases. So I said yes, signed the contract and got on with my work. I also pledged to give any royalties to the rare disease foundations I work with. In the back of my mind for the past few months, all I could think about was writing on something I really am not an expert on but which might help others, by presenting the famous ‘Ekins naive perspective’ on a topic.
That blog topic was released today, a burst of writing after breakfast (not usually peak creativity time for me) and I put together a draft on giving advice and then taking that advice on starting a rare disease company. I am not a classic entrepreneur, no MBA, no business training, never started anything in my life and I do not drool after others’ business advice. Talk is cheap. 3 years ago I dispensed a little advice to Jill Wood, she listened, and she went off and started a company. It took 2.5 years to fund and we have a very long way to go before we will likely have anything to show for it. Although with rare disease parents and devoted scientists like those involved, that could change very quickly. I dispensed advice but really I was probably telling myself to do the same. I had a huge moment of inertia to overcome, a family, 2 children and several part time consulting jobs that paid for the fun projects. Helping rare disease groups has become a bigger part in my life. You meet the rare disease children, the parents, the families, the scientists and that has a big impact too. Whatever I can offer is pretty insignificant, but ideas and experience at funding work through grants is totally translatable. A positive outlook when all the odds are against you helps in some small way. We will never start a major pharma but then we do not have to. Small is great. One scientist, one parent or patient is enough. The straw that broke the camels back was meeting another rare disease parent a few weeks ago, she told me of the treatment that might help her daughter that was languishing in a lab. I resolved then that I had to use the experiences gained from starting one rare disease company to start another for those unable to do what Jill did, because they have a full time job looking after the child with a debilitating disease.
At coffee with a good friend a few days later I mentioned my need to start this New Company and my severe inability to actually do it. I went off and wrote a 1 pager because that is what I generally do, write something. My friend then put me in touch with an accountant and the ball was rolling. A couple of weeks later on and I had no reason why I could not write todays blog, I had given advice 3 years ago and it it took me that long to take it myself. Better late than never. My incorporation papers came through today.