Sunday May 7, 2023

Cycling for Rare Disease Awareness & Research

L'Etape Las Vegas by Tour de France

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.


Auction for Rare Diseases Fundraising Het Ventiel Muscular Dystrophy Association

!! New !! Auction 4 Rare

To help our fundraising efforts, you can now participate in our silent auction! Click on the picture, discover the fantastic items you can win, and place a bid! Auction will be open through June 7, 2023.


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!

Meet the Umbrosa Engels Cycle 4 Rare Diseases cycling team!



The Riders

Gilles Vanpoucke headshot

Gilles Vanpoucke

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.

Jonas Beel headshot

Jonas Beel

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. 



The Causes

Frontotemporal dementia is an umbrella term for a group of brain disorders that primarily affect the frontal and temporal lobes of the brain. These areas of the brain are generally associated with personality, behavior, and language.
 ALS is a disease of the parts of the nervous system that control voluntary muscle movement. In ALS, motor neurons (nerve cells that control muscle cells) are gradually lost, leading to muscle weakness, disability, and death.
A group of diseases that cause weakness and wasting of the muscles in the arms and legs. The muscles most affected are those closest to the body (proximal muscles), specifically the muscles of the shoulders, upper arms, pelvic area, and thighs.



 The Organizations

MDA Muscular Dystrophy Association Rare Diseases

US - Muscular Dystrophy Association

MDA is committed to transforming the lives of people affected by muscular dystrophy, ALS and related neuromuscular diseases through innovations in science and innovations in care.

Het Ventiel Buddywerking Dementie Dementia Rare Diseases

Belgium - Het Ventiel

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.



The Venue

L Etape Las Vegas Tour de France Logo

Las Vegas, Nevada just off the strip will be the scene of our event!

Starting in Downtown Las Vegas, the ride will take us into the scenic Red Rock Canyon before heading back to the Las Vegas Ballpark Stadium.



Proud Sponsors

Umbrosa Sponsor Rare Diseases
Engels sponsor Rare Diseases
GVP Global Advisor Sponsor Rare Diseases
Hype O Dream Sponsor Rare Diseases
Deblaere Vande Maele Sponsor Rare Diseases
Crest Sponsor Rare Diseases
Kafaet Cafe Waregem Rare Diseases Sponsor
Ingress Rare Diseases Sponsor