Exploring My Mind Palace: Putting The World Orphan Drugs Congress 2014 Together In My Head

In Orphan Drug Congress by Hugh Blackstaffe


Nothing is ever simple. Everything is made infinitely complicated and challenging by the most incredible thing to ever have evolved from the primordial ooze all those millions of years ago…the human brain.

It has limitless potential, incredible power, and the capacity to change the world with a single thought. It’s a biological computer controlling every part of your body, but is simultaneously  able to be controlled by, essentially, itself. It can be commanded to consider specific information, focus on a task, put certain information to one side and work on different information. It does occasionally have problems, like giving you a headache while trying to blog about the brain, while using said brain it to write said blog and asking deep philosophical questions to myself such as “does it control me or do I control it?” in order to make the content of the blog, which takes up quite a lot of brain power to consider…

Hang on, I need a coffee to get my head round this…

Right, that’s much better. Ok, where was I? Ah yes, the brain.

The brain can do many amazing things. It can create, it can order, it can destroy, it can build and structure, it has the capability to write poetry or construct space stations, it can calculate the number of potential chess moves and positions (10 to the power of 120 if you’re wondering, which is said to be more than the number of observable atoms in the universe, which is between 4×10 to the power of 79 and 10 to the power of 81) and it can edit it’s own memories.

Every persons brain is totally unique in it’s construction, wired up in a specific way that makes us individuals (To quote Monty Python’s Life of Brian “Yes! We’re all individuals!). The power of the brain, is however subject to this unique wiring, with certain abilities being more powerful than others. For example, I have dyscalculia, a form of dyslexia related to numbers. I have a real problem with maths and number comprehension. The flip side is that I’m really good at reading words out loud at speed, which is a problem for many people with dyslexia. My dyscalculia also affects my logic abilities, and by extension, my ability to organise things, so pulling together all the information I need to create an international event, featuring dozens and dozens of speakers, in a foreign country, while staying on top of all the industry news, stocks and shares (bearing in mind that numbers are an issue), call schedules and everything else to do with everything ever related to work is…to say the least…a challenge.

The way my brain works, or at least the way i think it works, is mildly similar to Benedict Cumberbatch’s portrayal of Sherlock Holmes. All the information is stored in a big building in my brain, filled with rooms full of filing cabinets of information, some of it work related, some of it personal, some of it good for pub quizzes and some of it that I will keep locked away, never to see the light of day. In ‘Sherlock’, Holmes accesses his mind palace, starting with a single word or image and then examining every single link connected to that word or image until he secures the information he needs. He works his way through the corridors until he finds the room that holds the information he needs.

My mind palace is, however, compromised structurally thanks to my dyscalculia. It’s more of a bouncy castle than a palace, where I start off on solid ground with my word or image and then bounce around off the walls, ceilings, floors, crashing into rooms of  information that, whilst interesting, is entirely unconnected as to what I need to find, but is spread all over the place, spilling out of filing cabinets and fluttering about in the air. This makes it difficult to get hold of what I need and get smacked in the face with stuff I don’t need, further preventing me from the 100% focus required. It does however lead me to interesting things that maybe I had not considered, and then apply these ideas to my work. It keeps my brain ticking over and active, refocusing intensely for a period of time and then relaxing and then refocusing again. The brain is a muscle and needs time to rest.

For example, while writing this blog I have read an article on the emerging trend on social media interaction with patients by pharmaceutical companies, scheduled a call with a scientist and sent some emails to colleagues. Now, these are undoubtedly work related and reasonably on task.

As well as this I have read an article on a man who punched a shark in the face, tried to remember what city Machiavelli was born in, begun to construct my new fitness regime, considered the ballistic complexity of trying to shoot out a high speed boat engine from a helicopter while both travelling at speed over the ocean, and pondered who is going to walk away with the Academy Award for Best Film.

This is the challenge of my brain. This is also a good insight into my own personal interests, but that’s another blog.

With orphan drugs, there is just so much information relating to so many different factions, sectors, organisations and companies. Honestly, trying to get a handle on it all was going to be a really big challenge and it’s one I’m still wrangling with.

I’ve built on an extra wing to my bouncy mind palace, to cope with this new part of my life. Storing the majority of information from my research calls, emails, desk research etc let alone from the event side, the theme and decor, the agenda, the speakers I want, and on top of that the bigger concepts of making the event relevant, informative, provocative and hopefully deliver solutions that will save lives. It’s optimistic to say the least. I do have note books and files and colleagues and a boss who can help with tracking it all, and I’m reliably informed that my current phase (the ‘Research Phase’) is the most intense. I can see what I want the event to look like, what the images are on the projector screens, the dinner, the sights and sounds. The challenge is making it all happen as well as fitting it all into my brain, and on paper and online. To say that I’ve got my work cut out for me is an understatement.

I have to consider pricing, reimbursement, regulation, registration, advocacy, policy,  the past, the present, the future, stocks, shares, acquisitions, communications, networks, geography, biology, chemistry, gene therapy, questions, answers, discussions, debates, problems, solutions and pretty much everything connected to ever facet of the orphan drug and rare disease world…and from this, I get my event. It’s like a premium alcoholic spirit, distilled time and time again until it is as pure as possible…and that thought has just given me another idea for another blog topic…thank you brain.

So, how does this relate to the broader orphan drug and rare disease sector? Well, coming from me and based on what I’ve heard, there needs to be a great balance of perspective and priority. Everyone is doing their own thing, considering and working with only the things relevant to them and I would go as far to say that there is systemic ignorance to the wider sector. 100’s of thousands of people are involved in the orphan drug/rare disease world. Everyone operates from their own side, doing it from their own perspective, whether that be a financial one, an advocacy one,  a regulatory one or a scientific one, as is their prerogative. This perspective does however lead to issues, placing certain self serving priorities over the needs of others. Whilst I appreciate that everyone has their own priorities, from what I’ve heard, there is a lack of understanding from how other links in the orphan drug chain see things.

This is a problem for everyone. This is going to lead to more divisions, more time until cures are found and further problems unless the rare disease world start to unite and work together instead of working on their own, without the mutually beneficial and communicable relationships that are needed to succeed. We are all responsible for curing the rare diseases in our own way, but we need to unite, put aside our own priorities and reconcile everyone’s interests in order to succeed.

We need to see everyone else’s mind palaces so we can truly advance and develop for the greater good.

If you enjoyed this blog, please do visit the website here for more information on the World Orphan Drugs Congress.

If you’d like to get in touch, my email is hugh.blackstaffe@terrapinn.com and I’m also on Twitter @HBlackstaffe.

Thanks for reading