On May 7, 2023, we will be participating in a cycling competition in Las Vegas, NV (USA). The competition is 44 miles (71 kilometers) long with about 3,000 feet (920 meters) elevation gain. Our goal is to raise awareness for rare diseases of close family members and friends and raise donations for organizations who help people with rare diseases.
There are between 5,000 and 8,000 rare diseases, most of which have a genetic basis, and most of which have an unmet need. It is estimated that one out of 15 persons worldwide could be affected by a rare disease - equivalent to 400 million people worldwide. Often, rare diseases are serious chronic diseases, and may be life threatening.
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). More information about our effort can be found on our website: cycle4rarediseases.org.