Parent Project aps is a project that brings together parents of children affected by Duchenne and Becker muscular dystrophy, a rare genetic disease. It was founded in Italy in 1996 with the aim of supporting families, funding scientific research and promoting the global care that allows to improve the quality of the patients’ life. In Italy it represents about 600 families and works for the whole Duchenne Community of more than 25,000 people, including patients, families, researchers, therapists, social and health workers, schools and civic organizations. Via the regional offices, the organization serves the associated families and transforms the entire "social environment" in which they live.
Dys-Trophy Tour is a circuit of mountain bike races and cycling tours by Parent Project throughout Italy, to discover unique places and raise awareness. Every year there are new stops and appointments but the last stop of the tour is a special event: Dolomiti for Duchenne.
Dolomiti for Duchenne
‘Dolomiti for Duchenne’ is a 3-day mountain bike event that has as its main scenery the town of Villabassa and the entire Val Pusteria. The bikers will need to ride on unique routes and live three days together with the families of Parent Project. The event is non-competitive and includes three stages, each of which will have three types of routes: long, medium and short, depending on the needs of each participant. For 2021 the event is scheduled for June 17-20.
“In these challenging times, Datasight will continue showing its strong social engagement. Beside the current pandemic, we can not lose track of other people and especially children who need our help. We believe that charity events require strong partnerships to keep working on a better future for everyone! As Datasight, we are therefore keen to keep a certain standard of social commitment and offer our financial support to the Duchenne Parent Project foundation. We’ve been doing this for 5 years already and as we’ve built a strong connection with these children, this year will be our 6th.”, says Steve Hillen, Managing Partner of Datasight.
“This foundation raises money to carry out research and help children with Duchenne muscular disorder. Duchenne Muscular Dystrophy is a serious muscular disorder that occurs mainly in boys. The muscles show rapid progression of degeneration, leading to loss of ambulation at a very young age. The respiratory and heart muscles are also affected, which will eventually result in death. Few of these boys survive the age of 30. Let’s unite and together, we can ride Duchenne out of this world!”
Virtual Challenge on ROUVY
ROUVY’s augmented indoor cycling reality platform offers the possibility to ride anywhere in the world from home. So, ROUVY joined Datasight to support the Duchenne Parent Project in its fight against the Duchenne muscular disease. The global community of cyclists and triathletes has an opportunity to contribute and ride along and together with ‘Dolomiti for Duchenne’ participants for a decent purpose. Turning hard training workouts into an important contribution to those who need financial and moral support with ROUVY can be altogether beneficial, satisfying, motivating and fun. Athletes of all levels are welcome to explore beautiful rides from the real events in Italy with the Kronplatz Pass as a climax. This climb was a part of the ‘Dolomiti for Duchenne’ ride in 2019. Athletes suffering during training sessions are welcomed to think about the kids to pedal harder! Rides on 1:1 iconic climbs of the Dolomiti X Duchenne are promised to be enjoyable and immersive. To complete the Challenge, participants should finish the following routes on ROUVY during the Challenge period in the ‘time-trial’ or ‘race’ mode:
- Passo Valparola
- Scarlino Scalo
- Crocetta d'Orero - via Sant'Olcese
- Kronplatz / Plan de Corones
The Challenge ends on March 31, 2021.
Prizes and commitment:
Unlike the normal annual commitment of €2.000 for Parent Project aps, in 2021 for every rider that completes this Challenge, DataSight will donate 1 EURO, up to 6,000 EUR for the charity!
Registration for the Challenge is now open here.
Tags for the social sharing: #dolomitiforduchenne #fermareladuchenne #parentproject community.
Steve Hillen, Managing partner Datasight
About Parent Project
The association provides legal and psychological counseling services, training seminars dedicated to the entire Duchenne community, and different activities to support new families. Thanks to the activities carried out by the Duchenne Listening Center and Scientific Area, also in collaboration with other associations, today it plays an increasingly important role in the development of social and health programs organized by national and local public institutions.
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