The Tour of the Alps is not only a top-class cycling stage race, but also bearer of higher purposes. It couldn’t be otherwise, given its #LiveUphill payoff recalling the challenges that everyone faces to pursue the highest values in life. In 2022, the Euroregional stage race will support non-profit organisation ONLUS DEBRA, the association founded in 2004 by Isolde Mayr Faccin aiming to help children suffering from epidermolysis bullosa (EB).
This still little-known genetic disease makes the skin of those affected extremely fragile, forming blisters or painful wounds at the slightest touch or impact. There are about 30,000 so-called “butterfly children” throughout Europe, with 1,500 certified cases between Italy and Austria. People affected by EB have to live with the disease on daily basis, since there is no definitive treatment available yet.
Since its foundation, the DEBRA association has been active in helping people with EB by informing and supporting their families. The non-profit organisation is actively involved in the management of the EB House in Salzburg, a centre of excellence for the treatment of the disease, and in the research activities of the Regenerative Medicine Centre in Modena. In the last few years, DEBRA has started riding together with Anna Mei, an Italian ultracyclist who has become a DEBRA ambassador, in order to raise funds to finance the research.
The activity of DEBRA in the world of cycling will be further strengthened in 2022 thanks to the Tour of the Alps (18-22 April 2022). On the race’s eve in Cles and during the first stage (Cles-Primiero/S. Martino di Castrozza), the event organised by GS Alto Garda will host Anna Mei, while in the South Tyrolean stages with finish in Lana and Niederdorf/Villabassa the President of DEBRA Südtirol Alto Adige, Anna Faccin, will attend. The organisation is also working to involve DEBRA Austria and its President Rainer Riedl during the final days in Tirol.
“For us, to flank the Tour of the Alps along the Euregio Tirol-South Tyrol-Trentino represents a great opportunity, giving visibility to the disease that affects butterfly children – said the President of DEBRA Südtirol Alto Adige, Anna Faccin -. In the last few years, through the initiatives of our testimonial Anna Mei, we have been able to expand the knowledge of EB, making us believe that even if we are rare we are not alone”.
“We have always shown attention and solidarity towards the most difficult challenges of life – GS Alto Garda President Giacomo Santini argued -. We feel honored to commit ourselves: DEBRA deserves all our efforts”.