Our 3.5 year old son Benji was diagnosed with Duchenne muscular dystrophy at the age of six months. As parents, we naturally try to do everything we can to somehow provide him with the best quality of life possible. There are several experimental gene therapy treatments in progress for this disease, and there is one (Elevidys) that is already licensed and available in a few countries.<\/p>\n
The price, however, starts at 2.9 million US dollars. Like many other families in similar shoes, we started collecting and created the Fuss Benji Fuss Foundation, where we accept donations specifically to finance this gene therapy. The CsodaCsoport Foundation is our fundraising partner, and their Facebook auction group is also raising money for Benji. So together, we have managed to collect almost 24 million forints since last summer, which is a lot of money, but unfortunately it doesn't seem that much compared to the target amount.\u00a0<\/p>\n
We are looking for ways to raise even more awareness for this cause. We believe that it is not impossible to raise this amount. On social media, we are experiencing that the visibility of such campaigns is unfortunately limited.<\/p>","protected":false},"excerpt":{"rendered":"
Our 3.5-year-old son Benji was diagnosed with Duchenne muscular dystrophy at six months old. As parents, we naturally try to do everything we can to somehow provide him with the best quality of life possible. There are several experimental gene therapy treatments for this disease in progress, and there is one (Elevidys) that is already licensed and available in a few countries. However, its price starts at 2.9 million US dollars.<\/p>","protected":false},"author":1,"featured_media":2360,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[40],"tags":[],"class_list":["post-2366","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-orokbefogadott-csaladok"],"yoast_head":"\n