Originally from Waregem, Belgium, Gilles currently lives in Hermosa Beach, CA. Gilles was recently diagnosed with LGMD-2T, one of the many variants of LGMD. Gilles wants to use this opportunity to raise awareness for LGMD and raise funds for research into a cure for LGMD.
In the summer of 2020 Gilles started to experience a lot of discomfort and pain in his leg muscles as well as muscle throughout his body. The pain became so severe that he ended up in the hospital several times.
After 18 months of tests and uncertainty Gilles finally got a diagnosis after a genetic test and a biopsy: a rare variant of limb-girdle muscular dystrophy, named LGMD-2T. Although the diagnosis was a big blow, Gilles was also happy to finally have answers and he’s trying to adjust his lifestyle to live with the disease as well as possible.
Through intensive Physical Therapy with the people at Crest Physical Therapy in Torrance, CA Gilles is able to control the pain and discomfort better and can even ride his bike again. He also has a lot of support from his friends and family, and especially from his wife May Kim.
Gilles choose the Muscular Dystrophy Association (MDA) as the organization he would like to support because of its mission. Families are at the heart of MDA's mission. A caring and concerned group of families started MDA in 1950 and continue to relentlessly pursue our promise to transform the lives of people living with muscular dystrophy, ALS, and related neuromuscular diseases through research, care, and advocacy.
Originally from Wielsbeke, Belgium, Jonas currently lives in San Diego, CA. In 2012, Geert, Jonas' dad, was diagnosed with a repeat extension of gene C9orf72 currently known to potentially cause both FTD and ALS.
Symptoms of FTD have only slowly progressed over time and at this time are only prevalent in specific situations. Since the beginning of 2022 however, Geert started to experience a rapid progression of ALS symptoms.
While up until a year ago he was able to take longer beach walks, getting out of bed and doing basis day-to-day tasks has now become a challenge. Likely as a result of the ALS symptoms, Geert had a bad fall in August 2022 resulting in multiple rib, shoulder, and head fractures, a collapsed lung, and a subdural hematoma.
Recovered from his injuries through the good care provided by my mom, Bernadette, doctors, nurses, and physical therapists, and support from his friends and family, Geert now lives back at home requiring around the clock care.
Jonas choose Het Ventiel as the organization he would like to support because of its mission. One of the consequences of symptoms for people with FTD is not being able to participate in social activities. Through Het Ventiel's buddy support system, FTD does not have to result in social isolation.