Foundation "Vlinderkind"

Blisters for Blisters

Friday August 28, 2015 at 6:00 PM, I will start in the 2015 Ultra-Trail du Mont Blanc. The UTMB® is a single-stage mountain ultramarathon around the Mont Blanc over 170.3KM (106 mi) with a total elevation gain of 10,000M (30,000 feet). The UTMB® is regarded as the most difficult footrace in Europe. 

I will start in the UTMB because I love running and because I love and hugely respect the great outdoors. But more importantly, I will run this race to raise money for the “Vlinderkind” ("Butterfly Child") Foundation . The Vlinderkind Foundation raises money to find a breakthrough in the search to find a cure for EB. 

Epidermolysis Bullosa (EB) is a life treatening genetic skin condition which causes the skin to blister and tear at the slightest touch.  Patients' skin is literally as fragile as the wings of a butterfly. It’s a rare disease (globally 1 in every 22.000 people and 1 on every 10,000 births) which has a very sever impact on EB patients and everybody closely involved. 

I was made aware of this disease via Jack, a rugby friend of mine who's son Jesse has EB. After understanding the earnestness and impact of EB  (as well through the documentary “The boy whose skin fell off” about Jonny Kennedy - a 36 year old EB patient who filmed the last months of his life), I decided to raise money to support the Vlinderkind Foundation running the UTMB®.  Jack is one of the founders of the Vlinderkind Foundation - which is one of the main financial donors for international scientific research to find a breakthrough for a cure.

My post-race blisters will heal. Unfortunately, the blisters of EB patients not (yet).  Thanks for supporting me in raising money to support the Vlinderkind Foundation in their support to search for a breakthrough to find a cure for this disease. 

Thanks so much.

Frank Persyn

More information on EB can be found on::

www.vlinderkind.nl (Dutch)
www.debra.org.uk (UK sister foundation)
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Organizer

Frank Persyn
Organizer
Bagnes

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