In August 2022, Marion Schiha a 26-year-old assistant manager in university sports at Strasbourg and Nicolas Ramos a 27-year-old firefighter from Paris, will climb the Mont-Blanc massif, a fundraising challenge for the research against a rare disease.
Climbing Mont Blanc: a challenge for 2 children with Sanfilippo syndrome
The fundraising campaign is that of the parents of two young boys, suffering from Sanfilippo syndrome: Eden (5 years old) and Abel (1 year old).
"It's like childhood Alzheimer's, children gradually lose their abilities, memory, walking, and their life expectancy rarely exceeds 15 years, specify the two athletes. We contacted them three weeks ago, their mother is not getting discouraged, even if the sums to be collected are colossal."
A clinical trial for Eden and Abel
There is no cure for this rare disease, although encouraging trials have been performed in the United States on mice. To carry out a clinical trial on Eden and Abel, their parents must already raise €500.000, in order to carry out tests for two years; if these prove conclusive, an intervention may be considered at the end of the two years, with an estimated cost of €1.5 million.
Via a fundraising campaign opened on the site "Vaincre les maladies lysosomales" a little more than €250.000 € have been collected, but Marion and Nicolas hope to be able to bring €100.000 with their fundraising project. They also created their association, called Mont doudou blanc, "since the idea is to take the children's stuffed animals with us to make them travel with us".
More info here : Mont Doudou Blanc - Pour Eden et Abel par Vaincre les Maladies Lysosomales
In the Pyrénées for the physical preparation
“We have already climbed several peaks together, including Pic Aneto in Spain. We exercise regularly. Then in April, we will spend a few days in the Pyrenees to continue the preparation. In itself, the ascent is not necessarily complicated, but it is absolutely necessary to be accompanied by a guide."
A film will be made with the guide, Jean-Yves Fredriksen and the director Nicolas Alliot, at the end of the ascent.
The donations collected around this project will be entirely donated to the parents, allowing them to finance a clinical trial in the USA for their children.
Source: @La Nouvelle République
