This June, the International Myotonic Dystrophy Consortium (IDMC) returns to Paris, the site of its first meeting in 1997, to celebrate its 10th conference. IDMC, a global association of myotonic dystrophy researchers, physicians and healthcare professionals, promotes research and facilitates efforts to find viable DM treatments and a cure. A large team of organizers and scientists is working to bring together the international myotonic dystrophy community, but one volunteer in particular, Alain Geille, has put his heart into the work.
A Diagnosis Becomes a Labor of Love
Alain Geille is a research engineer from Bordeaux, France. In addition to his day job, he serves as co-head of the DM1 group of the Association Française Contre les Myopathies (AFM), a partner of IDMC-10. He brings a real understanding of the disease to AFM because his involvement with DM is very personal. His son Benoît, now 20 years old, was born with the congenital form of DM1. After giving birth, his wife Catherine began to show signs of the disease and was diagnosed as well.
"When Benoît was born, he could hardly breathe or eat on his own," says Alain. The newborn stayed in the hospital for care and testing, and was eventually diagnosed with DM. After about six weeks, Benoît's breathing and eating became more normal and he was allowed to go home. "He has struggled with symptoms throughout his life," says Alain, "but he's a happy kid. He doesn't complain." Catherine's symptoms are mild and include mainly leg weakness. As a result, like many other DM families, the Geilles live with the impact of the disease every day.
AFM Delivers DM Resources and Support Throughout France
Alain's work with myotonic dystrophy extends far beyond his family: as co-head of the DM1 group, Alain volunteers at AFM every day. The organization is a leader in connecting DM families throughout France with information, resources and support. The AFM DM1 group organizes five to ten meetings per year across France that feature presentations by doctors, researchers, psychologists, and other professionals working in the field. Importantly, these presentations are designed to be two-way interactive discussions. "The scientists learn as much from the patients as the patients learn from the professionals," Alain emphasizes. "It's important for researchers and physicians to understand the experience of those living with the disease."
The DM1 group is nationwide, and there are about 25 AFM regional divisions and 80 local delegations in France to better assist families in their own communities. Each region has an AFM office where patients can go for information. According to Alain, "if patients are unable to get to the local AFM office, the regional divison can send a representative to that person's home. There, the representative can provide information and help patients solve problems, including filling out paperwork required for care and treatment, and even helping with room and furniture arrangements."
IDMC-10 Conference Will Be Available Worldwide Via Livestream
In addition to his regular work with AFM, Alain is now busy helping to coordinate the interactive family session of the IDMC-10 conference. The Paris meeting will host an expanded program for DM patients and family members, with whom conference attendees will have the opportunity to interact and answer questions. "The community here is so excited about the event," Alain says. "This will be a real opportunity for sharing and support." AFM is collecting questions from patients all over the world that will be posed that afternoon to the researchers in attendance. The IDMC-10 committee plans to broadcast the conference via livestream and capture it on video for posting online. (Watch upcoming issues of the MDF Dispatch for details on how to tune in.)
"Conferences like this are empowering for people living with DM and their families," notes Alain, "not only because they learn about the latest research and advances in treatment directly from the professional community, but also because they connect with other DM community members, hearing their stories and how they've managed symptoms and provided optimal support." Alain's personal experience with myotonic dystrophy has made him an invaluable member of the DM community in France. This year, the international DM community will reap the benefits of his dedicated efforts as a family member, caregiver and volunteer leader as well, via an exceptional conference family session.