Why does Valeria need my help?
In order for Valeria to live and develop like any other child, she needs a drug that is precisely adapted to her gene mutation. Since neither health insurance nor IV is involved, the family is dependent on YOU. Thanks to the financial support of the families, friends and numerous donors, only half of the costs could be collected together with the equity of Valeria's parents. The hope lies in many people like you, who have a heart for Valeria and who contribute to Valeria growing up healthy. So that they can laugh, talk, run, play and go to school.
Why is every small donation precious?
Because we're strong together. We need YOU and all your friends. No matter how small your donation is. Every donation is precious. If, for example, all people from Central Switzerland donate 1.20 francs, we have reached the huge sum. Together we can do it!
Why is there no medicine for Valeria yet?
KCNT1 was discovered in 2014. Since then only about 100 cases are known worldwide. Very rare diseases are of no financial interest to the pharmaceutical industry. Valeria's parents desperately looked for a solution day and night and were rewarded: "There is a lot of hope for little Valeria. Prof. Dr. Len Kaczmarek from Yale University (USA) and a team of neurogenetics are creating the urgently needed drug for Valeria.
How does this medicine work?
Valeria has an "error" on the KCNT1 gene. The drug contains particles (oligonucleotides) that dock to this defect and cover it. It acts like a patch. Then the body functions again as if this error were not there. The therapy is called antisense-oligonucleotides.
Why doesn't the health insurance or the IV pay for the medication?
Neither the health insurance nor the invalidity insurance pays for the development of a drug. The health insurance company and the infalidity insuranse only pay for drugs that are already available on the market.