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Feb
12

A new start- one conference at a time

Once you meet someone at a conference (or perhaps under other circumstances too) the experience can potentially change what you do. Yes I actually wrote that, from personal experience. What I had not expected was that this can happen over and over again. Is it because I am particularly receptive or malleable? I do not think so. I was worried that I had become more rigid in my ideas as I aged. Whereas moving to new locations used to be fun and exciting, it now haunts me. Meeting people is not a strength of mine, but several conferences have opened me up to the opportunity that other people can really inspire you. These meetings include Partnering for Cures and Science Online. Meetings with absolutely nothing in common. One, Partnering for Cures is a meeting that focusses around roundtable type discussions at the audience and innovator presentations (the only opportunity for audience feedback), interspersed with a couple of social events at which the pharma, scientist, philanthropy, advocates can meet and chat. The second, Science Online is an unconference, with moderated sessions and a great deal of audience input all the way through. This year each day started with several diverse short presentations that got one thinking, they inspired you for the rest of the day. The conference also has a very strong social component. As a second year attendee to both conferences recently, I met fascinating people and came away with many ideas from both. I am now in a state with many ideas circulating and the realization, I have to decide what I want to pursue. I have reached idea overload.

Over a year ago one meeeting at Partnering for Cures lead to getting involved in advocating for Sanfilippo Syndrome. This connection then lead to helping other rare disease groups over the last 12 months (Jonah’s Just Begun, Hannah’s Hope Fund and the Hereditary Neuropathy Foundation) which have formed around their children or themselves having a disease. In each case the individual has become an expert (on a par with a Ph.D.) on the disease through connecting to researchers globally, their own study of the disease, fundraising and funding research, as well as developing commercial efforts. Clearly these three groups have a common interest in that the diseases affect the CNS. However, their individual efforts are generalizable to many other diseases. There are over 7000 rare diseases. How could we take what the 3 groups have learnt and apply on a much larger scale? All of them lack a scientific team to coordinate efforts and take the weight off them to drive the research. It is my opinion that we need to centralize many of the efforts and translate to other rare diseases where there may not be current organizations driving the research. I am not aware of any way to manage groups working on 7000 rare diseases. Believe me that would be some incredible networks to visualize.More importantly if we could do for 7000 diseases what we are trying with three that would be progress.

A year ago Science Online stimulated me to think about opening up the science so it becomes accessible and people could collaborate and find the information percolating on the web. What could be done to help rare diseases to raise awareness. An opportunity through the Pistoia Alliance led to the development of a mobile app called ODDT. Now I think a new opportunity beckons and have come full circle in a little over a year. This week we will go to a rare disease conference called World Symposium  focussed on lysosomal diseases and present a poster on how the mobile app has been used for raising awareness of Sanfilippo syndrome. This will be an interesting meeting I am sure as I will get to meet collaborators for the first time, and hopefully connect to other researchers. Rare diseases are increasingly getting widespread coverage so the timing seems right .

Of course I realize I would not be going to the meeting if I had not met Jill Wood at Partnering for Cures in 2011, I would not have come up with an idea for an app if not for Science Online in 2012 inspiring me to think about openess and data overload and it would not have been developed without knowing a talented scientist and app developer in Alex Clark. Definitely there is a huge human component to what we do, I had never imagined that meetings at conferences would have such a big role. I do not get the same level of inspiration from American Chemical Society meetings or for that matter any of the massive conferences I occasionally attend. Why is that? Is it the conference size, the topics, the diversity of the attendees. Perhaps its some combination of these. I look forward to meeting you at the next conference and perhaps we can discuss this !

 

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