F.rancesca Pasinelli, 61 years old, a degree in Pharmacy, since 2009 she has been general manager of Telethon Foundationthe charity that raises funds to advance the scientific research for the treatment of rare genetic diseases. From 1990 to the present, Telethon has allocated 624 million euros and put 1676 researchers to work out of 2804 projects relating to 589 diseases. Important numbers, behind which there is the great generosity of donors but there are also people who work to give concrete answers to those in need. Among these people, she is in the front row.
Francesca Pasinelli, 61, graduated in Pharmacy in 1983 and specialized in Pharmacology in 1987, worked as a researcher and then as a manager in important international pharmaceutical companies. Since 2009 she and she have been general director of the Telethon Foundation, the charity that raises funds for scientific research for the treatment of rare genetic diseases.
How did it come to Telethon?
After graduating in Pharmacy, I immediately started working in the pharmaceutical industry, first in research laboratories, then as a manager. I was lucky, in those years the companies were training, and so I was able to grow. But I was not satisfied. I kept looking for something that answered my questions of meaning.
Did the answer come thanks to Telethon?
Yes. I came into contact as a donor, and I felt the call of that world. I had believed that scientific research was the goal. Being in contact with the sick I understood that it was instead a tool, and that the aim was to give an effective response to patients, in a field that was then neglected such as rare diseases. I tried to make an impact by putting my skills at the service of the Foundation, thus introducing models taken from businesses into the non-profit sector. There was a lot of good heart in the charities, but more professionalism was needed, both because they manage donated money and to meet expectations. Fundraising is important, but the study of needs, management and distribution of resources also count. Creating impact means providing funds for rigorous research to arrive at a cure. Skills are needed to make purchases professionally, to make an assessment, to answer on the best possible use of money.
Can a feminine approach help to get to the result?
In women there is a greater propensity for treatment, and my choice to leave the business world has to do with the need to do something more, to seek treatment where there is none. The faculties of Medicine and Life Sciences are filling up with female students, and I wonder if this idea of care and life is not at the basis.
Treatment means finding the right therapy. How did you get pharmaceutical companies to make drugs for rare diseases?
A decade ago they were little interested. We gradually established alliances, signed contracts. The companies that choose Telethon do it for social responsibility but also because those drugs that treat rare diseases, and therefore are not very interesting from a commercial point of view, are also the basis for developing other innovative drugs for more widespread diseases, as has happened. for Covid. In any case, we protect our drugs: if the company gives up, the license goes back to us. And this is allowing us now to face the next challenge, perhaps the most important.
Which?
A company recently withdrew a product because it was no longer commercially attractive to them. We asked ourselves: could we allow the treatment of a patient to be blocked? No, we never would. We therefore decided not to interrupt the production of the drug, directly creating a new non-profit pharmaceutical branch; a structure that produces and distributes a therapy developed by us.
Does this mean that Telethon will also become a pharmaceutical company?
Yes. The challenge is to create a non-profit reality, which will produce drugs and will also support itself with donations. Every life counts, and the supply chain will now be complete: research, production and distribution to help patients. This is our idea of impact.
A great responsibility. How do you live it?
My work is a privilege that every day gives me an answer to that question of meaning I asked myself years ago. This is why I don’t feel fatigue.
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