There are between 5,000 to 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.
Our goal is to raise awareness for rare diseases of close family members and friends and raise funds for organizations who help people with rare diseases.
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! Donations as little as $35 help provide telehealth appointments at MDA health centers while $50 helps connect families with MDA-funded clinical trials. Anything else will help fund vital research for a cure!
For more information, take a look at www.cycle4rarediseases.org!
Please make a donation. Thank you!