The story of Brett
Hi, My name is Brett Matlosz. I am a freshman at Newark Academy. I am a competitive swimmer for both Newark Academy and Metro Lifetime Fitness. I am hosting an event called the Wet Brett –“Wet T-shirt” Swim Challenge on Rare Disease Day this year in support of my cousin Sienna, and the IFOPA. My eleven year old cousin, Sienna Otto, suffers from an extremely rare condition called Fibrodysplasia Ossificans Progressiva, otherwise known as FOP. FOP is a progressive disease where your body is slowly changing your muscles and tendons into a second skeleton. Some bone growth is spontaneous, but bumps or trauma can also lead to flare ups that cause additional bone growth. That bone growth progressively leads to restrictions, and often people with this condition lose mobility completely, and eventually can become locked in place. Please watch my video about FOP and Sienna. . I hope to raise awareness and funds to cure FOP, through donations to the IFOPA.org (ifopa.org/wet_brett). Thank you in advance for your support of Sienna and IFOPA.