On May 7, 2023, we will be participating in a cycling competition in Las Vegas, NV in the US. The competition is 44 miles (71 kilometers) long with about 3,000 feet (920 meters) elevation gain.
Gilles will be participating in this competition after having been diagnosed recently with Limb-Girdle Muscular Dystrophy (LGMD). Jonas will be riding in Gilles' support as well as in support for his dad who was diagnosed with Frontotemporal Dementia (FTD) and Amyotrophic Lateral Sclerosis (ALS).
Together, we want to raise awareness for rare diseases and raise donations in support of organizations that help people with rare diseases. Donations will be accepted through June 7, 2023!
Jongdementie slaat toe terwijl het actieve leven nog in volle gang is en spoelt de vaste grond onder de voeten vandaan. Activiteiten die altijd vanzelfsprekend waren, worden door de jongdementie langzaamaan onmogelijk. Het Ventiel richt zich op de activiteiten die met een beetje hulp nog wél mogelijk zijn.