The Bianchi family was diagnosed with PKAN last year for their now 3-year-old son Giulio. The parents then launched a fundraising campaign via PayPal and a Christmas card campaign in the private environment for the benefit of PKAN research and by wearing self-designed T-shirts with the logo "Fight NBIA" on the illness of their youngest son and on Hoffnungsbaum e.V. attentive.
Parents Tony and Melanie Bianchi with Leonardo and Giulio (from left to right)
Friends and acquaintances, as well as strangers who are touched by Giulio's fate, have donated numerous times PayPal to the PKAN research fund of Hoffnungsbaum e.V. In a short time, more than €10,000 was raised. In addition, Giulio's parents have the Christmas cards that Hoffnungsbaum e.V. Last year, it was used for a fundraiser among their relatives and friends, raising a total of €5,000 for research into Giulio's illness.
Although several therapeutic options are or have been researched, no drug or other therapy has yet been found that could stop the progression of this serious progressive disease or cure PKAN. PKAN is quite common in the very rare NBIA diseases, predominantly affects children, adolescents and young adults and is globally widespread.
The family has also posted an Instagram page at: https://www.instagram.com/love_giulio/
If you would also like to donate to PKAN research, you are welcome to do so by noting: "PKAN" or "Giulio" to the donation account of Hoffnungsbaum e.V..