M-CM stands for macrocephaly-capillary malformation. It is a rare genetic syndrome first identified by researchers in 1997.
Could you tell us a little about the M-CM Network and how it was formed?
When my daughter, Signe, who is now 2 and a half years old, was diagnosed with M-CM, there was already a strong patient support community online facilitated by a family in England. The Internet and social networking largely solved the problem of connecting patients to each other without the need for a formal organization or fundraising. Because peer support was taken care of, our own organization was founded to accelerate research and make it easier to get clear, reliable information about M-CM.
AnnMaria De Mars is President and founder of the Julia Consulting Group based in Santa Monica. She’s worked in both academia and business. We talked to her about how access to research affects her consulting business, and her reaction to the Research Works Act
Could you tell us a little about the Julia Group and what you do?
We mostly do statistical consulting, contracted research and customized programming. We were originally a satellite office of Spirit Lake Consulting, Inc., founded around 2000. We spun off as a separate company in 2008.
Mark Bisby is an ex-professor, ex-civil servant. He ran his own lab in physiology and neuroscience for 25 years, and then joined the Medical Research Council of Canada just before it transitioned into the Canadian Institutes of Health Research (CIHR), where he became VP Research. There, beyond his own specialty knowledge, he learned a great deal about the importance of other approaches to health research such as population health, and health services research. Mark retired six years ago, but like so many people seems to have been just as active since! We asked him how he’s using his broad knowledge and experience. Continue reading →
The Institute of Development Studies (IDS), based in the UK, is a leading global charity for international development research, teaching and communications. Alistair Scott is an Information Systems Manager with its Mobilising Knowledge for Development (MK4D) programme.
Alistair explains what they do:
We work with partners in developing countries to build a bridge from research to policy and practice. We do this by delivering open access information products and services such as Joto Afrika – an East African briefing series on Climate Change Adaptation which was developed jointly between ourselves and the Kenyan organisation ALIN (Arid Lands Information Network).
In his professional life, BJ Nicholls is an advertising designer; but in his spare time he, along with is wife Lori, is a volunteer fossil preparator at the Natural History Museum of Utah. What does that entail?
Most fossil discoveries require a tremendous amount of preparation work after a specimen is excavated. Fossils are typically brought back to preparation labs with little of the fossil exposed. We’ve been trained to remove the surrounding rock (called matrix) and to stabilize fossil bones that are often in very poor condition.
Kelly Trout is a registered nurse by profession. She is also a leader of a small nonprofit organisation called the International WAGR Syndrome Association, and the parent of an adult with WAGR/11p Deletion syndrome. This is an extremely rare disorder — fewer than 500 cases have been identified worldwide. The primary features are Wilms tumor (a type of kidney cancer), Aniridia (absence of the iris), Genitourinary tract abnormalities, and intellectual disability.
Craig Dylke is known on the Internet as Traumador the Tyrannosaur (the name of his Dinosaur puppet). He’s a Canadian born primary teacher, currently residing in Hong Kong where he teaches English and Science at an international primary school. He integrates scientific topics and themes into most of his lessons, and in his off hours he is a very prolific palaeo-artist (someone who tries to recreate long extinct prehistoric life through art).
Peter Murray-Rust is a chemist specialising in informatics, recently retired but still active in research at Cambridge University, England. He aims at creating “chemically-artificial-intelligent machines”. These can understand simple chemical discussion (written and spoken) and extract the chemical information.
We spoke to him about his work.
Nick Barnes’s background is in the software industry, where he has twenty years’ experience as a researcher, programmer, consultant, and manager. He is also the co-founder (with David Jones) of the Climate Code Foundation, a non-profit organisation to promote the public understanding of climate science. The Foundation’s “elevator pitch” is:
Public trust in climate science has been undermined, and public support for policy changes eroded. We’re rebuilding that trust and support, by improving the transparency and communication of the science, and especially the software used in the science.
Douglas Carnall was a GP in inner-city London for twelve years, and was an editor at the British Medical Journal (BMJ) for seven years. As if that wasn’t enough to keep him busy, he also wrote and edited for The Guardian, LinuxUser and Reader’s Digest on subjects as varied as careers and cycling.
But he left all that behind to become a freelance translator. His speciality is translating technical material (medical and computer-related) from French into English.