Event European Forum on Philanthropy and Research Funding: Partnerships in Research
Date 2 December 2008
Venue Milan, Italy
Organizer European Foundation Centre

The European Forum on Philanthropy and Research Funding is an initiative that brings together research-focused foundations, universities, and a number of private and public stakeholders in the EU. More than 130 delegates gathered in Milan, at the Fondazione Cariplo conference centre, for the second meeting of the Forum last December, following an inaugural conference in Brussels in 2007. Partnerships in Research was the challenging theme chosen for this year’s conference.

Acknowledging the role of foundations and philanthropic organizations as the ‘new kids on the R&D block’ (in the words of European Foundation Centre chief executive Gerry Salole), the aim of the Forum is to provide a basis for philanthropic funding for research through the exchange of experiences and best practices, cooperation on research funding, and promotion of a favourable environment for private philanthropy undertakings.

Different approaches to partnership among foundations and other private and public stakeholders were presented in the opening plenary session. During an illuminating overview of the pros and cons of partnership, David Lynn, Head of Strategic Planning and Policy at the Wellcome Trust, suggested the need to evaluate carefully all future implications of new partnerships, taking into account, among other things, the governance model at the basis of the decision-making process, legal, fiscal and intellectual property issues, and (since nothing lasts forever) a possible exit strategy.

Two parallel sessions about governance and about evaluating the impact of research were a follow-up to the first conference in Brussels (both issues are critical to any research foundation’s strategy). The other three sessions were more focused on partnership, including a compelling discussion on fundraising strategies for universities. A scheme presented by Philip Nye from the Department for Innovation, Universities and Skills (UK) was particularly intriguing: under the programme, the UK government will match the philanthropic donations raised by universities with public funds. After a successful start-up phase, the UK is planning to invest £200 million in the matching scheme, stimulating new partnerships between academia and private funders.

During its first year of activity, the Forum has tried to represent the vast and diverse world of the philanthropic organizations involved in European research. Appreciating the quality of most speakers and the assorted background of participants, the Forum would benefit from a still more inclusive approach. Fundraising charities, for example, were still underrepresented in the session panels, while non-endowed foundations, which rely on volatile private and corporate support, would probably have provided a different and interesting angle on many critical issues discussed in Milan.

Sergio Pistoi is a consultant for research development and policy at Telethon Italy. Website www.sergiopistoi.com

For more information www.efc.be/projects/eu/efprf

• Paperback: 184 pages
• Publisher: Benbella Books
• Language: English
• ISBN-10: 1933771321
• ISBN-13: 978-1933771328

As each new Michael Crichton book grazes the cutting edge of scientific technology, this innovative guide serves to expose the plausibility behind the inventions of Crichton’s thrilling fiction. This fascinating analysis puts Crichton’s novels to the test, examining shocking developments—regarding dinosaur cloning, global warming, nanotechnology, time travel, animal behavior, and human genetics—and revealing the validity of the science behind them (or lack thereof). Exposing the truth behind the miracles and nightmares Crichton describes in his work, this tell-all resource dissects the science at the heart of each of his bestselling novels.

• Publisher: Benbella Books; illustrated edition edition (January 1, 2008)
• Language: English
• • ISBN-10: 1933771283
  • ISBN-13: 978-1933771281

With the final novel in the Dune series, Sandworms of Dune, released in August 2007, fans need their Dune fix. In The Science of Dune, fans will get just that and more.

In this analysis of the bestselling science fiction adventure of all time, authors explore all aspects of Dune, including the fascinating scientific speculations ranging from physics and chemistry to ecology and evolution, from human psychology and mental potential to technology and genetics. Authors and experts examine what Herbert gets right and what he gets wrong, how lasguns might work and if Bene Gesserit and mentat capabilities are possible. The book also takes a look at whether the ecology of Dune is realistic or if it’s theoretically possible to get information from the future. Could humans really evolve as Herbert suggests? How can one build a windtrap or a stillsuit?

Unpublished

If the genome is, with a fair approximation, the cookbook with the recipes for all the components that make up our organism, researchers are finally able to browse the entire book and even to recognize single phrases and chapters - genes and chromosomes, respectively. At least, this was the good news that came with the publication of the final draft of the human genome. The bad news (or not, depending on your point of view) is that, when it comes to understand how the genome works, the DNA sequence is only part of the story.

The genome draft has showed that humans have between 25.000 and 40.000 genes, only about three times as much as the fruit fly and almost as much as the thale cress, a small plant, simpler organisms that, as far as we know, are not able to write or send spacecrafts to the moon. It is now clear that what makes the difference between Einstein and a banana is not the number of genes but their type and probably, the way they are regulated. Moreover, 95 per cent of our DNA does not code for any protein, and it’s hard to think that all this information, which every cell painstakingly passes over to its descent, is just “junk”- as it was dubbed in the past. Indeed, in recent years researchers have found that the genome has a layer of complexity bigger than just the sequence of letters contained in the genes.

They called this type of regulation epi-genetic ( literally, “sitting above the genes” ) because it does not affect the content of genes but, instead, decides if and how they will be switched on, read by the cellular machinery and eventually traduced into proteins. This brings an enormous level of complexity to the genome: each gene has a unique DNA sequence but can have potentially infinite epigenetic states.

Scientists are accumulating evidence that epigenetic phenomena play a critical role in normal growth, functioning and aging of the organisms. Faulty epigenetic mechanism are also suspected of contributing to a variety of diseases. The Online Mendelian Inheritance in Man (OMIM), a database of human genes and genetic disorders, lists more than a hundred ailments where epigenetic mechanisms are involved or strongly suspected. Some are rare, such as the Facio-Scapulo-Humeral muscular dystrophy, the Prader-Willi, Angelman and Beckwith-Wiedemann Syndromes, but the list also includes common diseases such as cancer and diabetes. By looking at the “dark face” of the genome, the study of epigenetics could suggest new strategies to treat these disorders.

There are several known epigenetic mechanisms, and many other are probably to be discovered. Methylation, a chemical modification by which an hydrogen atom is replaced by a small carbon compound called methyl, is a well studied mechanism that cells use to earmark portion of the genome: when methyl groups are added to a gene, this usually means “this gene is locked up”. It is a bit like stapling or gluing together the pages of a book: the information itself, stored in the print or in the DNA, is unaffected, but has become impossible to access. RNA, a working copy of the DNA that transfers genetic information in the cell like a computer diskette, is emerging as another fascinating actor of epigenetics. Antisense RNAs (anti-copies of genes that can block their information) and non-coding RNAs - both thought once to be useless- have been instead found to regulate the activity of thousands of genes and even of entire chromosomes.

A sophisticated mixture of methylation and RNA-mediated “silencing” is responsible for blocking one of the two X chromosomes of females. Epigenetics also explains a genetic phenomenon called imprinting, where a trait becomes apparent if it is inherited from the mother and not from the father, or vice versa. For example, the Angelman syndrome, a rare genetic disease caused by the loss of a portion of chromosome 15, will manifest only if the defective chromosome comes from the mother. The same defect, but on the paternal chromosome, will curiously cause a different disease, the Prader Willi syndrome. Researchers have found evidence that this happens because the maternal and paternal versions of chromosome 15 are imprinted in different ways. Epigenetic defects also contribute to the genetic chaos that leads to cancer. In fact, some experiments suggest that methyl-removing drugs could be useful to treat a form of leukemia and maybe other types of cancer, in which tumor-suppressor genes are blocked by methylation.

Stem cell research and cloning could benefit largely from advances in epigenetics, too. Imprinting has an amazing capacity to wipe out and restore itself during development: soon after an oocytes is fertilized, nearly all imprinting is removed from the chromosomes but is then re-established during gestation. Researchers agree that most clones obtained in the laboratory fail to develop properly because they miss this important, and still mysterious, “reprogramming” step. Adult stem cells, too, must go trough a similar reprogramming process before they can transform themselves into different types of tissues and be used in therapy.

The exploration of the heretofore invisible side of the genome has just begun. One day, the consequences for the understanding of our biology and for our health could be huge.

Copyright Sergio Pistoi  All rights reserved

As a scientist, there are endless occasions where you are called to speak about your work or to give an expert opinion on scientific subjects.

• Can you be simple and accurate at the same time?
• Can you condense your message in a few words?
• Can you get your story  across, involving the lay audience and the press?

FROM BENCH  TO PUBLIC is my communication and media training workshop tailored for researchers and science/medical professionals.

The approach is very interactive and entertaining and includes many activities  and role-plays that will show you the do’s and don’ts of communicating science with the public and the media.

Do not expect a “classic” lecture. In fact, I will  not lecture anyone: before  I moved from research to science journalism, I did all the mistakes that scientists do when dealing with communication. This put me in a good position  to  help you  avoid most of such errors.

I have successfully used this approach during my appointment as a teacher for the Master in Biomedical Science Communication at the University of Tor Vergata (Rome) and in many  other workshops in Europe (an incomplete list is here).  

FAQs ABOUT MY COURSES:

WHAT IS THE LENGTH OF WORKSHOPS?

A typical workshop is about 2 hours-long, which includes some practical activities.

A longer workshop (3 hrs to one day, to many days!) allows a “full immersion” with many individual and groups activities.

I also do introductory seminars of about 1h30.

WHAT CAN I DO TO HOST  ONE OF YOUR  WORKSHOP?

There are many ways to do that. The simplest is to contact me to arrange  a workshop/seminar in your institution or venue (congress, convention, course etc..). I’ll be happy to hear your needs and help you to choose the appropriate length and focus for the course.

Please note that I currently do courses only by invitation from a host institution/company. Therefore, it is not possible to sign up as an individual to my courses.

HOW MUCH DOES IT COST?

The cost depend on the type of workshop and on how far is the location. Anyway, my requests are always very reasonable. Feel free to contact me for any information.

WHICH ARE THE LANGUAGES?

I have done  workshops in English, Italian and French. I can travel almost everywhere.

DO YOU HAVE HANDOUTS FOR THE PARTICIPANTS?

Yep!

WHERE IS A LIST OF YOUR PAST WORKSHOPS?

An incomplete list is here.

Photos were taken during Biopop workshop in Bologna. Courtesy: Biopop.

My skinning of the beast started in 1997. I was back to a lab in Italy after my Ph.D. in molecular biology in Paris. Like all my postdoc siblings, I spent long days surrounded by mice, pipettes and all the paraphernalia of the modern molecular biologist.

At night, when most of my colleagues where peacefully lying on their sofa, or engaging in more grooving nocturnal activities, I morphed into a writing Mr Hyde. Earlier that year, I had made my first step into science writing by unmercifully harassing the editors of an Italian science magazine until I got my first assignement. A few months later, took more courage and successfully pitched a couple of news stories to Nature and The Lancet.

My double life was becoming interesting but also difficult to match with my research career, the sanity of my neurons, and the sparse social interactions with non-rodents. It was time to make a choice.

I turned down a sweated-out fellowship renewal. I made sure that my transition was as smooth as possible for my colleagues and the research project. Then, I bought a PC, fax, modem and a new desk and I set up business in my home apartment. I found out that the best survival strategy was to be creative and keep my range as broad as possible. I made a list of all the science book and magazine publishers in Italy and sent my CV to all of them. If not luck, at least statistics would be on my side. A few answered. I worked as translator, as a ghost writer, as a reviewer for science books.

I also contacted Telethon Italy, the charity that financed my post-doc, and I proposed them to set up a website that would provide information to patients about genetics and hereditary diseases. They liked the idea and signed me up. The website (www.informagene.it) is now a national reference in its field. It was the start of a rewarding and long (still ongoing) collaboration with the Telethon, a world-class and dynamic research charity.

A few years later, another turning point in my carrier was the internship at Scientific American in New York. It was one of my greatest and more enriching professional experiences. Unexpectedly, I fell in love with the Big Apple. I still try to go there as often as I can. The next year, I was awarded a journalistic fellowship from the Armenise-Harvard Foundation to the Harvard Medical School in Boston.

That’s the way I started. it’s just one of a zillion possible starts (and probably not the most straightforward), but I hope that my experience will be helpful to those who are considering a career into science writing.

A piece of advice for a carrier switch? Here you go: if you are a scientist, don’t think of science writing as an easier alternative to research. Like research, journalism is a difficult and extremely competitive world. I also found out that a research background can be very useful, but is not essential. I usually cover the fields where my research experience and my sources are most valuable: biomedical, genetics, stem cells and “hot issues” such as cloning, biotech, GMO and research policy. When I deal with these subjects I prefer to do fewer but longer, in-depth stories than many shorter ones. However, I don’t like to be over-specialized and I try to keep my scopes broad. I cover IT, geography, physics. I am always open to explore new territories and I love to travel.

Finally, I am often asked if I miss the laboratory. The answer is: yes, I do miss the laboratory. Perhaps this is why I choose to devote a large part of my activity to the monitoring and strategic planning of research, which I do for Telethon. Together with science writing, this is an excellent way to be a part of the scientific community. When I miss the sound of the centrifuge, the long arrays of minitubes on a rack, the smell of phenol, I can still pay a visit to one of my many lab-rat friends.

Spektrum der Wissenschaft (German edition of “Scientific American”), Jan 2006

Scientific American, May 2004 Read it

Technorati Tags: MP3, Scientific American

Scientific American, February 16, 2004 READ IT