Mission Statement

FOPAshleysCure is dedicated to improving lives by helping to find a cure for FOP. We make a difference by supporting FOP research and by creating awareness of FOP. Our team of friends, family, and organizational partners work together to accomplish our mission through fundraising, education, and caring.

How You Can Help

You can contribute to the success of our mission by promoting awareness of FOP through your network of personal and professional associations, donating to FOP Research.


What is FOP?

One of the rarest, most disabling genetic conditions known to medicine, it causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone.


Ashley's Story

Due to the unpredictable nature of the disease and the lack of a cure, Ashley must severely limit her physical activities and avoid any situation that might expose her to the risk of being injured.




My name is Jade Maracic, and I am 11 years old and I have a hero.

Her name is Ashley Martucci; she is my cousin and she is my HERO! She is 12 years old, beautiful, smart, funny, my best friend and she is the bravest person I know! On February 10th, 2015 life as Ashley has known has changed forever. Ashley was diagnosed with Fibrodysplasia Ossificans Progressiva (FOP) also known as Stone Man Syndrome, which is one of the rarest and most disabling genetic diseases medically known today. Approximately 1 in every two million people are reported to have FOP. and my cousin Ashley is that 1. FOP turns muscles, ligaments, soft tissue and tendons into solid bone. The slightest bump, bruise, fall, muscle fatigue, vaccination, flu, virus or even dental work can trigger a painful "flare-up" and start the process of abnormal bone growth. The new bone growth will permanently restrict the ability to move parts of her body. Her jaw can become fused and her chest cavity encased with bone, making it difficult for her to eat and even breathe. If the bone is removed it will only cause the rapid and explosive growth of new bone in its place. Imagine having a second skeleton over the one you were already born with. Ashley loves the outdoors and playing sports (especially soccer). Instantly, her physical activities have come to a halt to try and avoid any risk of being injured. For my energetic and free spirited 12 year old cousin this news has broken our hearts. Sadly, there is no cure for FOP and Ashley is just beginning her battle. Ashley is courageous and she will ALWAYS be my HERO! Thank you from the moon and back!


  • RSTAR FAMILY: lets show some love & help 12 year old Ashley in her brave battle

    Singer Songwriter

  • Hey everyone lets help this brave little 12 year old girl Ashley!

    Brody Jenner
    Television Personality

  • See our wonderful sponsors on the events page