Help us raise funds to support research for Lesch-Nyhan Disease !
The Lesch-Nyhan Disease (LND) is a rare genetic disease that affects mostly boys from their first year on. Today no specific treatment or cure exists, but current researches show promising results.
I discovered this terrible disease when I met Hidde, a wonderful 8 year old boy.
Hidde lives in the Netherlands with his loving parents, and younger brother and sister. He is a very bright and sharp-eyed lad, with a deeply moving and perceptive gaze. Since being a little boy, he faces his difficult everyday life with courage and a remarkable sense of humour. Dependent on the constant care of his formidable family and school he has very little autonomy, but he learns to communicate through a computer with eye tracking technology.
LND is characterized by neurological and behavioral disorders and renal problems.
People with LND suffer from involuntary muscle movements and muscle rigidity, which means they usually cannot walk, require assistance sitting, and generally use a wheelchair. They also often have trouble swallowing and speaking.
In most cases LND patients suffer also from severe self-mutilation. It is unknown how the disease causes these problems.
I will start a long ride across the USA on April 4th, departing from the Brooklyn Bridge in New York on my bicycle to arrive 3 months later at the Golden Gate Bridge of San Francisco. Along the ride, I hope to raise awareness for this little-known disease.
The ride should be about 7000 km long.
As LND is generally not commercially interesting for pharmaceutical groups, the financing remains the biggest obstacle for the medical research.
The French association Lesch-Nyhan Action (LNA), created by the families of boys affected by the disease, funds as much as their resources permit the different medical researches. LNA has been supporting a researcher at the hôpital Necker in Paris for the last couple of years, but is dependent on private fundraisers such as this one to continue to do this.
All funds collected will be used for medical research only. You can help us here !
You are welcome to follow my journey on Facebook (page here) and Instagram (follow “RollinWithVincent“).