A Monaco-based charity with an international impact

The Association Monégasque contre les Myopathies, at the origin of the Only Project, has been active internationally since 2001 with the mission to find a cure to Duchenne muscular dystrophy, a genetic condition that affects 1 boy in 3,500 and leads to progressive muscle deterioration, loss of autonomy and eventually premature death.

The organization has been pursuing this goal for more than 20 years by:

  • Organizing key conversations between researchers and doctors to share knowledge and accelerate breakthroughs (roundtables, research programs…);
  • Financially supporting dozens of research projects with the goal of reaching and refining therapeutic solutions (scholarships and grants, creation of 2 biotechs, financing the setting up of a clinical trial…);
  • Locally addressing the equipment needs of patients and families.

Some of our key values and principles in operating the charity are:

  • Sobriety in terms of functioning expenses (approximately 1% of funds raised) and a light structure.
  • Safeguarding the means to our independence so as to be as agile and efficient as possible.
  • Conservative budget planning to be a 100% reliable supporter and partner.
  • A tenacious belief in the power of collaboration.

Our history

It was Paul Pettavino’s diagnosis with Duchenne muscular dystrophy in February 2000 that prompted his parents, Luc and Monique Pettavino, to create the Association Monégasque contre les Myopathies and to raise funds to accelerate research towards therapeutic solutions.

Starting 2001, they set out to organize auctions around one-of-a-kind concepts in the arts and luxury sector (The Mona Lisa Project, Adam & Eve, Only One…). In 2005, realizing that the watch market had something special in terms of craftsmanship and desirability, Luc Pettavino came up with the idea for Only Watch, a unique watches auction that he launched in 2005 with 34 watchmakers.

Edition after edition, thanks to a growing mobilization and commitment of the watch industry, of collectors, and all supporters (media, partners…) Only Watch grew bigger and brighter and allowed for a paradigm shift in terms of scales of funding available and possibilities for the consortium of parents and researchers federated around the same cause: finding a cure to Duchenne muscular dystrophy.

Only Watch 2011 at the Hermitage, Monte-Carlo

Only Watch 2021 at Palexpo, Geneva

Looking back on 22 years of history, here is a short film that binds together the fundraising timeline with the research timeline.

Understanding the cause: curing Duchenne muscular Dystrophy… and rare diseases

Our main focus since 2001 has been Duchenne muscular dystrophy. Here are a few elements to understand better this condition.

Description of the condition

Duchenne Muscular Dystrophy is a genetic disease that affects approximately 1 in 3,500 boys caused by a defect in the genetic sequence of dystrophin, an essential protein in the cellular structure of muscles that, as a result, is not produced.

The dystrophin gene (the longest gene in humans) being located on the X chromosome, the disease affects almost only boys and men (girls and women having a second X chromosome, they are only very rarely affected).

Transmission

Duchenne muscular dystrophy can be transmitted by a carrier parent (usually the mother, who is unaware that she is concerned by this genetic difference) or be linked to a spontaneous mutation in the reproductive cells.

Diagnosis

The diagnosis is generally made around the age of 4 or 5, when a delay in certain motor functions is noted by the patient’s close entourage (frequent falls, difficulty in running, jumping or climbing stairs, fatigue and muscle pain).

Consequences

It is a progressive disease in which muscle fibers – notably those of the heart – degenerate. The impairment of cardiac and respiratory functions is usually an inevitable critical point that leads to death between the ages of 19 and 30.

State of research

To date, although the arsenal of medical care (physiotherapy, drug treatments on specific symptoms, braces, standing wheelchairs…) has evolved to allow for better comfort and to maintain cardiac and respiratory functions at a satisfactory level for a longer period of time, there is no recognized therapy for Duchenne Muscular Dystrophy that allows the rebuild of the missing protein, dystrophin.

Clinical trial

In recent years, a very significant part of the funds raised on Only Watch have been mobilized on the development of lead compounds and on the setting up a clinical trial for a therapy developed by a biotech created with a consortium of parents and researchers and entirely funded by the generosity of watchmakers and collectors. The drug aims to treat patients affected by the most frequent type of deletion on the gene leading to Duchenne muscular dystrophy and could be transposed and adapted for numerous other genetic diseases. First results of the safety phase are expected within a few months.

What’s next?

The clinical trial – even more so if it succeeds – symbolizes the beginning of a new era and a whole new scale of action for our organization. If results are positive, the safety phase will be followed by efficacy phases and the development of similar drugs for other types of deletion on the gene (there are different types of genetic flaws on the same gene that lead to Duchenne muscular dystrophy – the first drug developed and tested targets exon 51).

In parallel, because therapy and care will always be plural and because the subject is so wide Only Watch funds will continue to fund initiatives, young talent and brilliant committed minds of all generations and in all types of environments (hospital, university, patient-oriented biotechs…) on topics such as: the evolution of the heart in Duchenne, the ability of modified blood cells to repair muscle, the development of new techniques to sample muscle without pain and scars, R&D on new types of mobility aides… and more.

Opening to rare genetic diseases

The gene responsible for DMD being the longest one in the human DNA, research into this one condition has allowed scientists to develop promising perspectives on other genetic conditions. When such developments are within our reach, we are attached to facilitating them, especially for rare diseases where very little means are currently invested. This is why the charity’s motto has evolved to: “Accelerating research on Duchenne muscular dystrophy and genetic diseases”.

Project & Community

We support researchers – within patient-oriented biotechs or public institutions – with the primary goal to find a cure to Duchenne and alleviate suffering.

Discover the supported projects