The Canavan Research Foundation

Our son Artyom needs your help.

 He was recently diagnosed with a terrible genetic disease, Canavan disease – a rare brain disease characterized by progressive damage to nerve cells.

 Most of these babies die before they turn 10 years old.

 For our family, this is a tragedy, it is a terrible nightmare that burst into reality.

 We were told to accept the fate of our child, to let him die. But what parent can accept such a fate?

With my husband, we did not want to accept this prognosis, which can take away our baby so early from us.

 And we began to search for information. We managed to find a scientist who has been studying Canavan disease for more than 20 years, who has dedicated her life’s work to trying to save Canavan children.

Her name is Dr. Paola Leone, and she runs the gene therapy center at Rowan University in New Jersey.

 
They are developing a gene therapy that can help these sick children, which would allow them to develop, acquire new skills, and stop the dreaded degeneration of the brain which occurs so quickly.

 But gene therapy is very expensive and not government funded, and the disease is so rare that pharmaceutical companies have no interest in funding it.

 We have a chance to rescue our Artem. We can’t miss it.

 He is already 1 year old.

 He cannot hold up his head, can’t turn over, sit up, or walk.

 
But he understands everything. He is full of smiles for his parents and older brother, and we know he loves us very much.

 How much we want to see our little son raise his head, sit up, hug us and utter the words “mom and dad.” Without your support, our family simply cannot cope.

 Will you help us give Artyom his chance at life?