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Telethon

Telethon foundation

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Telethon

Telethon is the second biggest biomedical charity in Italy. Its mission is to advance biomedical research towards the diagnosis, cure and prevention of muscular dystrophies and other human genetic diseases.

It was founded in 1990 by a patients’ association as an initiative inspired by- but not affiliated with- popular Telethon marathons in the USA and France. Telethon Italy focuses on scientific research. In its first 20 years of activity, the foundation has invested more than 300 million Euros in research and funded 2,200 research projects on more than 440 human genetic diseases,  from basic research to clinical trials.

From 1998 to 2010 I coordinated scientific dissemination at the Telethon  Foundation, reporting to the Chief Scientific Officer. From 2008 to 2010 I also worked as a consultant for scientific development. My  role included:

Scientific dissemination

  • Coordinated media activities (in Italian and English) to publicize the work of Telethon Foundation contributing to its excellent standing in Italy and abroad.
  • Developed an effective information flow to and from Telethon laboratories (over 800 grantees) to ensure prompt dissemination of scientific discoveries. Maintained strong and productive relationships with Telethon-funded researchers.
  • Tracked and  selected newsworthy developments for  communication to the press and the public. Produced over 80 press releases which  obtained extensive  coverage in the media.
  • Organized press conferences and public meetings.
  • Successfully oversaw a group of 2 to 4 co-workers.
  • Contributed to producing 5 editions of the Telethon TV Marathon.
  • Created and managed an information website  that generated over 150,000 visits/month and an infoline  on genetic diseases with more than 3,000 requests each year.

Translational research  and evaluation

 

Producing rock-solid press releases

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press releases

 

A well-crafted press release is the best starting point for disseminating science to the media.

 

Who says that scientific stories are always misrepresented in the press? It isn’t necessarily so. In my experience, a scientific work can receive extensive and accurate press coverage with an appropriate media strategy.

Since 1998, I have produced and disseminated more than a hundred scientific stories to the press.

 

My press releases have been covered by the international media and have generated stellar visibility for many projects and the scientists behind them.

However, the extent of media coverage is only one parameter by which I judge the success of communication. Scientists are not seeking instant celebrity at all costs; instead, they want to disseminate balanced and scientifically correct information and avoid hype.

 

I have a long-term, demonstrable track record of generating widespread and scientifically accurate coverage for my clients’ research.  This is not wizardry but the result of strategy, attention to detail, close relations with scientists and knowledge of media.

 

I help my clients in all phases of media dissemination, writing press releases, coordinating distribution to the press and assisting journalists for the follow-up of stories.

 

I have done media management for projects and organisations of any size, from single press releases to multi-million consortia. My work has helped many clients act as a reliable and authoritative source for the media, contributing to maintaining and increasing their reputation.

Annual reports with more appeal

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bilancio telethon3

Annual reports are an almost mandatory communication item for most research organisations. A good report must showcase scientific achievements with a clear, concise style and convey an organisation’s values and goals to a non-technical audience.

 

In 2006, the Telethon foundation asked me to review and edit their existing annual report in order to improve its readability and overall impact.

 

For fund-raising charities like Telethon, the annual report is particularly important: It helps stakeholders and potential donors evaluate the organisation’s accountability, transparency and efficiency.

 

The original document focused on hard facts about the foundation and on financial figures. I suggested a radical content redesign. We eliminated several redundant or unnecessary sections of the document, and the first part of the report was shifted towards stories that exemplified the goals and achievements of the foundation.

 

Transparency and hard data were still essential in the report, but they were now presented within the context of a story. We placed stodgy financial figures in an annex outside the main body of the document and organised them more rationally. We hired a graphic studio for the cover and the layout.

 

The resulting report was shorter (which, incidentally, saved the foundation a few thousand euros in printing costs), easier to read and more informative for the average stakeholder. After that redesign, I edited five editions of the report, which received very positive feedback from readers and stakeholders.

 

 

No-frills explainer for a research charity

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Telethon book

The Telethon Book, Facts and Figures about Telethon Research is a concise, easy-to-read introduction to the Telethon foundation and its impact in the field of genetic diseases.

I originally produced the book as an internal document for the foundation’s Scientific Advisory Board (SAB). This explains its “memo”-style.

After the SAB meetings, we  decided that the book would  provide a useful backgrounder for a wider audience. The pdf file was then published   on the foundation’s website in its original form: no-frills but highly informative.

Download the Telethon Book 2010

Telethon Strategic Plan for Research

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The Telethon Strategic Plan for Research 2006-2010 was the first effort to outline the objectives and research priorities of the Telethon Foundation. Working as the Telethon’s consultant for scientific development, and reporting to the foundation’s Chief Scientific Officer, I contributed to the planning process with the help of an international scientific advisory board (SAB) composed of eminent experts.

 

The work involved several meetings with the SAB in New York over a five-year period. For its size and objectives, it was one of the most ambitious research planning efforts for a research charity in Europe.

 

The title “Moving Towards New Therapies” underlined the Telethon’s mission: transforming excellent science into therapies available to patients. The plan identified four strategic priorities and nine key areas of management.

 

A website for rare disorders

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Informagene

 

Informagene.it (on wayback machine)

 

Informagene.it was the first Italian website—and one of the first in Europe—to offer concise and easy-to-understand information about rare and genetic disorders. During its 10-year life (1998-2008) it helped thousands of people in the fight against rare genetic disorders. I am particularly proud of Informagene not only for its huge success, but also because it was my first full-fledged communication project.

 

Because most genetic diseases are rare, they are neglected by major private and public funding and even unknown by many doctors. It is not uncommon for people affected by such disorders to wait years before they receive an accurate diagnosis or find a support group.

 

My idea for Informagene came when I was a post-doc in Italy. Working with muscular dystrophies, I realised the importance of clear and updated information for the affected families. My plan was to create a website that would cover some of the 5,000 known genetic disorders and also create an accompanying email service to provide on-demand information on all others.

 

I proposed the idea to the Telethon Foundation, who supported the project enthusiastically, and set up the first working service in six months. Informagene became a leading site, scoring over 100,000 visitors each month. The email service was staffed by genetic counsellors who answered over 3,000 requests each year. It was featured on national TV and radio shows and was widely reported in the media. Some of its contents were translated in other languages and used by patients’ associations.

 

When I moved to other projects, Informagene continued its activity until it merged with Orphanet, a multi-language, pan-European platform on rare diseases. Telethon still maintains an email and phone help line.