The postponement of Only Watch’s charity auction in November has given the organisation an opportunity to answer questions and adhere to international levels of transparency ahead of a relaunch in the new year.
An update sent to WatchPro today reiterates that Only Watch’s charity, Association Monégasque contre les Myopathies (AMM), which was founded in 2001 by a group of parents with a mission find a cure to Duchenne muscular dystrophy, has raised approximately €100m ($1.06m) and its disbursements have already delivered substantial scientific and medical progress including a phase 1 clinical trial of a proprietary molecule currently taking place in France with 12 patients.
The statement appears to concede that the current scale of the project has made far more professional governance necessary, but points to the fact that the spirit, passion and, to an extent, naivety of its founder Luc Pettavino was a great asset from the outset.
“The association remained small and agile, with no permanent staff, relied on a stable governance with a small board composed mainly of parents, and did not change its ways of functioning — allowing it to maintain functioning expenses around 1% and to act fast,” AMM and Only Project describe.
Its success relied on “the spirit being to rely on person-to-person trust, a lot of pro bono work and a profound determination to find a therapy for loved ones at home for whom the clock was ticking”, the statement continues.
Every effort has been made in recent weeks to put the project back on track including distributing documents giving detailed insights on the use of funds and the absence of any personal enrichment by members of the association.
There has been a detailed list of projects listed that have been supported DMD research over the past 10 years with names, institutions and amounts transferred.
It is also changing the shareholder structure of SQY Therapeutics, by far the largest recipient of the charity’s funds, to have it entirely owned by the charity associations involved and end the situation in which six members of families of patients, including Mr Pettavino, owned 51% of shares.
SQY Therapeutics has not paid any dividends to shareholders.
Now that the project has the breathing space of planning for 2024, it is promising to make certified accounts available to the public.
This will include having its financial statements audited by a certified auditor and making them available in the first quarter of 2024.
Governance will be strengthened by sharing more information about the board of directors and creating a more formal scientific consultative board featuring international profiles renowned for their expertise on neuromuscular diseases and DMD.
All audited accounts will be shared annually and a charter will be established “for the prevention and management of conflicts of interest”.
Bringing order to the “small and agile organization, with no permanent staff”, will not be achieved without investment, and AMM has said it will double its budget for the charity’s functioning expenses from one to two percent.
Well, I suppose that’s newsworthy on some level, but every entity, for- or non-profit, have operating expenses. That they “double” from one to two percent is not really significant, and if that’s the cost of responsible, timely governance, then so be it. Despite their good works, as they scramble to get their house in order, it still reflects shoddy governance. Let’s all be thankful, for the sake of those the foundation serves, that this was caught and is being rectified, before it had slipped entirely out of their hands. The excuse making about trusting a handful of individuals to do the right thing to save some operating costs is a weak excuse. “Good work ain’t cheap and cheap work ain’t good” as they say. Spend the money, get your house in order, and do things the right way. Thank you.