Barry Mone is just like any dad … he’ll do anything for his children.

Since late 2017, when his son Charlie had just turned 8, Barry and his family have been on a crusade. Around this time, through a series of circumstances and even observations of others … including a lady who they met at the local park … Charlie was diagnosed with Duchenne muscular dystrophy (DMD) — an incurable and ultimately fatal condition caused by a lack of dystrophin protein.

Charlie had earlier in life been diagnosed with Persistent hyperplastic primary vitreous (PHPV) … a common congenital developmental anomaly of the eye that causes a level of blindness, so when his “Duchenne” was diagnosed … life became more complicated.

As Charlie is the only “boy” in the world with both conditions, Barry and his family are on a constant journey to spread the word so that research and awareness … especially in Duchenne … is accelerated across the entire world. By doing this, they hope positive developments in treatments will occur and allow Charlie to continue to live his full life.

You can learn about “Charlie’s Hope” here:-

https://www.instagram.com/fightingforcharlie/

X/Twitter @dmdcharlie / @fightingforcharlie

http://www.facebook.com/fightingforcharlie

https://www.linkedin.com/in/barry-mone-b500b320/