Only about 20 people in the entire world understand the underlying disease mechanisms of LMNA-related CMD, and later this month, they will all be in the same room to share information about the latest research and discoveries since Dr. Gisele Bonne (present at the meeting) identified the first gene mutation of LMNA in 1999, which causes LMNA-CMD. This scientific conference, held at the Institut de Myologie in Paris, France, will take place on October 24 and 25, 2016. This conference is possible through funding from the Andres Marcio Foundation in Spain and through Cure CMD, via an award by the Patient-Centered Outcomes Research Institute (PCORI).
LMNA-CMD not only affects the muscles, but the heart as well—in fact, cardiac complications are the leading cause of death in patients in LMNA-CMD. Pediatric cardiologist Dr. Georgia Brugada (also attending the meeting) implants an extremely sensitive heart monitor into her young patients, which picks up their rhythms and transmits them to her lab. Already, two lives have been saved by this device. These experts at this upcoming, third annual, Paris-based conference not only break ground in their field, they are paving the way for other scientists to develop new treatments for more common diseases.
Says Dr. Gustavo Dziewczapolski, Cure CMD Scientific Director: “It’s rare that a scientific conference is held annually for most diseases, much less a condition as rare as LMNA-CMD. We are grateful for the PCORI award which has allowed us to convene this conference, for our partnership with the Andres Marcio Foundation, and for our LMNA experts who work year-round to build momentum for treatments and a cure.”
Cure CMD was founded in 2008 to advance research for treatments and a cure for the congenital muscular dystrophies. Cure CMD will also improve the lives of those living with CMD through engagement and support of the CMD community. To date, the organization has co-funded more than $2 million in research, has helped launch effective animal models, and connected more than 2,000 affected individuals to a supportive, helpful community. Visit www.curecmd.org for more information.