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Fondazione Telethon, Italy

Fondazione Telethon is an Italian non-profit, founded in 1990 and now registered as a third sector body, whose mission is to fund Italian research on rare genetic diseases. For prion disease it is the main private funder of the Italian genetic prion work: it has paid for the doxycycline prevention trial in people at risk of fatal familial insomnia (FFI) since 2011, sponsored by the Istituto Mario Negri, through at least four grants, and for a psychological support programme for trial participants and families run with the family association AFIFF. It also funds laboratory work on genetic prion disease at Mario Negri, including FFI and CJD mouse models and anti-prion compounds, and through its Dulbecco careers programme a prion drug discovery laboratory at the University of Trento. Telethon staff have taken part in update meetings with Italian prion patient associations, and the foundation has given patronage to AIEnP family meetings. Background beyond prion work is kept short here.

Key facts

  • Telethon was founded in 1990, is registered as a third sector body (RUNTS number 1217) with offices in Rome and Milan, and states that it funds Italian research on rare genetic diseases; its site gives undated totals of 3186 projects and 1958 researchers funded.
  • Both trial registries name Mario Negri as sponsor of the FFI doxycycline prevention trial and Fondazione Telethon as funder or collaborator; the trial started on 28 April 2011, completed on 30 November 2024 with 29 enrolled, and has no posted results.
  • The 2015 trial design paper credits Telethon grant GGP10208, and the 2022 public engagement paper lists four Telethon grants for the trial: GGP10208, GSP14001, GSP18001 and GSP21002.
  • The grant application for the prevention trial was submitted to Telethon in 2010 and funded; a Telethon funded psychological support programme for participants and families began in 2013 and was run together with AFIFF.
  • A Telethon story from September 2024 says Telethon has funded the Doxiff study since 2011 and credits AFIFF and researchers at Mario Negri and the Besta institute with conceiving it.
  • Telethon grants also funded the Mario Negri FFI mouse model (TGM11Z01, TGM11S01, GGP12115; 2015), the doxycycline study in FFI mice (GGP10208; 2021) and the dual action porphyrin compound (GGP15225; 2023).
  • A 2015 news interview puts Telethon support for the Mario Negri and University of Insubria porphyrin project at about 400,000 euros over three years.
  • Telethon GGP12115 and GGP15225 are listed on Mario Negri studies of a genetic CJD mouse model in 2017 and 2020, and GGP15225 again on a 2026 method paper for tracking prion protein turnover.
  • The Dulbecco Telethon Institute, a careers programme set up in 1999, gives five years of salary and research funds at a chosen Italian institute; it funded Emiliano Biasini to start a prion therapy group at the University of Trento from 2015.
  • Papers from that group, published as the Dulbecco Telethon Laboratory of Prions and Amyloids, list Telethon grant TCP14009 for compounds that block prion replication or lower prion protein levels (2017 to 2021).
  • In the fourth round of the Telethon multi-round call (December 2024) a Trento project to improve anti-prion compounds and test them in animal models was funded, as one of two CIBIO projects sharing 390,000 euros (sponsored university news).
  • A Telethon officer opened, with a Trento researcher, a 26 November 2022 update day for prion patient associations and moderated its round table; Telethon gave patronage to the AIEnP Rome meeting of 23 November 2019 and to the AIEnP and Mario Negri family meeting planned for Milan on 21 June 2025.
  • Telethon was a partner, with the Spanish prion foundation, of the AFIFF 2000 km cycle ride from Treviso to Bilbao in September to October 2024.

Timeline

  1. 1990Fondazione Telethon founded.
  2. 1999Dulbecco Telethon Institute careers programme set up.
  3. 2010Grant application for the FFI prevention trial submitted to Telethon and funded.
  4. 2011FFI doxycycline prevention trial starts with Telethon as funder.
  5. 2012Press report on a Telethon funded Mario Negri study in a genetic CJD mouse model.
  6. 2013Telethon funded psychological support programme for trial participants and families begins, run with AFIFF.
  7. 2015Dulbecco Telethon funded prion group starts at the University of Trento.
  8. 2015Telethon funded FFI mouse model paper published.
  9. 2019AIEnP Rome meeting for relatives held under Telethon patronage.
  10. 2021Doxycycline study in FFI mice published with Telethon GGP10208.
  11. 2022Trento update day for prion patient associations with a Telethon officer.
  12. 2022Public engagement paper on the trial lists four Telethon grants.
  13. 2023Porphyrin anti-prion paper published with Telethon GGP15225.
  14. 2024AFIFF cycle ride to Bilbao with Telethon as partner.
  15. 2024FFI doxycycline trial completed.
  16. 2024Fourth multi-round call results include a Trento anti-prion compound project.
  17. 2025AIEnP and Mario Negri family meeting in Milan planned under Telethon patronage (draft programme).
  18. 2026Mario Negri prion protein tracking paper published with Telethon GGP15225.
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