Washington DC (September 2020) Fibrous Dysplasia Foundation’s collaboration with Association MASFD results in funding a study to understand the central nervous system manifestations of McCune-Albright Syndrome
The Fibrous Dysplasia Foundation (FDF) is proud to highlight the Association MASFD’s $60,000 donation to a globally renowned University of Iowa neuroscientist, Dr. Ted Abel. Dr. Abel is the Roy J. Carver Chair in Neuroscience and a member of the National Academy of Medicine and directs the Iowa Neuroscience Institute, which explores diseases of the brain and nervous system. Funding of Dr. Abel’s project “A Murine Model for the Central Nervous System Manifestations of McCune-Albright Syndrome” is expected to help researchers understand why some patients with fibrous dysplasia and McCune-Albright syndrome (FD/MAS) are affected by cognitive or behavioral issues, a poorly understood aspect of the disease.
FDF agreed to work alongside Association MASFD when the founder, Aurelie (Lili) Lagneau, launched her campaign in France in 2018 to raise funds for FD/MAS research. Lili’s daughter Gaia has a severe form of FD/MAS, including developmental delay and an inability to speak. FDF has supported over three-quarters of a million dollars’ worth of FD/MAS research and has expert Medical and Scientific Advisory Councils, the latter chaired by Dr. Andrew Shenker. FDF learned about Lili’s priorities, discussed various options with her, and volunteered to guide Association MASFD through the process of critically reviewing and awarding this important research grant.
“Once my colleague Dr. Michael Collins and I heard that Lili was interested in investigating why some FD/ MAS children like Gaia suffer from cognitive or behavioral problems, we thought of Dr. Abel because of his strong reputation and his previous research on the effects of the gene that causes FD/MAS on the brain,” says Shenker. “It was very gratifying for FDF to connect this devoted, hard-working mother with a world-class researcher halfway around the globe, with all of us working together for a common purpose.”
The partnership between FDF and Association MASFD came about through the International Consortium of FD/MAS Researchers. Many patient advocacy groups regularly attend these meetings alongside experts in FD/MAS to share knowledge and develop strategies for understanding and treating this rare and debilitating disease. Lagneau states, “I’m glad that we have been able – even during these difficult times of 2020 – to reach our common goal together.” She continues, “I hope the collaboration between FDF and Association MASFD will progress to the next level by continuing to share our ideas and experience and give a better future to all patients who have FD/MAS.” Both FDF and Association MASFD share a passion for supporting collaborative, impactful research and improving patient lives, and are committed to working together towards these goals in the future.
About FDF: The Fibrous Dysplasia Foundation (FDF) is a community-led 501(c)3 nonprofit that fights back against fibrous dysplasia and McCune-Albright syndrome (FD/MAS). FDF serves people affected by FD/MAS through programs of research, education, and advocacy.
About Association MASFD: Association MASFD, founded in France by Aurelie (Lili) Lagneau, raises funds to support research projects, better understand the causes and mechanisms of FD/MAS, and/or to participate in the development of new therapeutic concepts.
About FD/MAS: FD/MAS is a debilitating rare mosaic disease caused by a postzygotic mutation of the gene GNAS that leads to Gαs activation and inappropriate production of intracellular cAMP. FD/MAS affects bones, skin, and other tissues and causes excess hormone production by endocrine cells. Patients develop areas of abnormal fibrous tissue in their bones, which often leads to fractures, uneven growth, pain, and deformity. FD/MAS presents in different ways, and diagnosis and treatment can be difficult. The journey to understand FD/MAS, find treatments, and ultimately a cure, requires collaborative efforts.