What is FD/MAS?

Fibrous Dysplasia (FD) and McCune-Albright syndrome (MAS) are rare, chronic diseases caused by a random, uninherited gene mutation on the 20th chromosome. FD presents as soft, malformed bones susceptible to fracture, chronic bone pain, and deformities. MAS is the combination of FD and abnormal hormone levels and/or rough-bordered birthmarks. FD/MAS presents in different ways, and diagnosis and treatment can be difficult. There is no cure and no way to slow the disease down. The journey to understand FD/MAS, find treatments, and ultimately a cure, requires collaborative efforts.

Why does L'Écheveau Solidaire fund FD/MAS research?

Aurélie (Lili) Lagneau, the founder of L'Écheveau Solidaire and its partner nonprofit MASFD, was first inspired to become involved in FD/MAS research when her daughter Gaïa was diagnosed with the disease in 2015, at just one month old. She was determined to do something to help her little girl, and fundraising to support research projects seemed like a clear and direct way to help not only her family, but others as well. As a passionate knitter, pattern designer, crafter, and dyer, she knew how to reach others in the community who might be willing to help.

And so, in order to care for Gaïa and focus on this path toward making a difference for her, for Gaïa and for other patients and their loved ones, Lili and her husband left their busy lives and jobs in Paris for the French countryside. And on Rare Disease Day in 2018, L'Écheveau Solidaire was born.

Where do my donations and purchase profits go?

Since 2018, L'Écheveau Solidaire has been a key aspect of the French nonprofit association MASFD's fundraising. Thanks to donations and store purchases, MASFD has been able to donate more than €145,000 toward research into understanding and treating McCune-Albright Syndrome and fibrous dysplasia of bone.

In 2020, MASFD made their first grant of $60,000 in partnership with the Fibrous Dysplasia Foundation. The foundation enabled MASFD to connect with and fund Dr. Ted Abel, founding Director of the Iowa Neuroscience Institute at University of Iowa, on a project focusing on the effects of the mutation on the brain, which had never previously been studied due to a lack of resources.

In 2021, MASFD made their first annual donation (in the amount of $12,000) to the Orphan Disease Center at the University of Pennsylvania, in the USA, as part of their “Million Dollar Bike Ride” fundraising program.

In 2022, MASFD was able to donate twice as much ($24,000) to the Million Dollar Bike Ride program.

In 2023, MASFD contributed $19,500 of the total $161,620 raised for the Million Dollar Bike Ride program. These funds allowed FD/MAS Alliance to award three new grants for promising projects.

And in 2024, we expect to donate at least $30,000 - and with your support, we hope to far exceed this target!