With the course of days and weeks, a third wheel appeared, a presence (for now) constant and that could not be ignored; Wolfram Syndrome.
Unfortunately these two people did not have it the knowledge nor the means to defeat definitavamente the problem, but with the awareness that this problem would not have the least affected their life together, had an idea, find people with their same problem, confront, collect all the information possible and give a hand to those who had the knowledge and the means to reach a solution.
So it was.
In February 2016 was born on Gentian Committee with the purpose of helping all people who were ushering for the first time in a world that has unfortunately not many certainties and creating a web of contacts between patients, doctors Italian, American doctors and other associations world.
This website and facebook (Sindrome Wolfram Italia) page are just the tip of the iceberg, Gentian is also born as an event organizer in order to recover money to be donated entirely to the Snow Foundation and the Dr. Fumihiko Urano who is studying a cure.
We need you, not only economically, the Wolfram Syndrome is incurable, especially because it is unknown, as the focus will shift on the research, the more likely you will find a cure for this and other diseases that have the same genes in common (Alzheimer’s and Parkinson’s in particular).
Just born, but we’re going to do great things, we have already managed to put patients in touch with doctors and other patients; Research is life, more people will contact us, more cases will be discovered, and more people will be interested in this Syndrome, the faster the solution.
We are Gentian, the first Italian Committee on Wolfram Syndrome and we are not going to stop until we have not found a cure!
You are not alone, write us, we will give you all the help and all the information!
UPDATE: June 2018: Finally we are officially an association! </ span>
Click here and find our statute!