Tuesday, February 22, 2011


Well here I go. I have been on Facebook for years and recently joined Twitter. So I thought now was a great time to start blogging. 

I am a rare, unique individual. I'm 29-years-old and live in 
Georgia. I was born to an un-wed mother and was adopted when I was nine weeks old. Just before I turned 3 years old, I was misdiagnosed with cancer and my right arm/shoulder  was amputated. Five months after my amputation I was correctly diagnosed with Fibrodysplasia Ossificans Progressiva, or more commonly known as FOP. FOP is 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. There are no other known examples in medicine of one normal organ system turning into another. FOP affects less than 700 known cases worldwide.  I am the only amputee with FOP.

In 1988 the International FOP Association (IFOPA), a 501(c)(3) non-profit organization, supporting medical research, education and communication for those afflicted by FOP was established. Our mission is to eliminate FOP as a health concern through education, advocacy, research and support.

FOP is a part of my life but it doesn't define who I am. I want to use my blog as a platform to not only showcase what's happening in my life but also to educate others about my disease. I truly believe that education is power and the more I educate those that I come in contact with the more recognition will come to FOP.

I’m excited to see where my blog goes.  I have many adventures past and present to share and look forward to blogging my life's adventures.


  1. So glad you set up this blog, Ashley. I hope you enjoy writing it and having others learn and FOP and the amazing person you are.

    Your friend,

    - Richard

  2. You are such a true inspiration and a wonderful, caring person. Thanks for working so hard to bring attention to FOP.

    Tamara Gerken

  3. I love the blog and look forward to having others get to know you and the amazing person you are. Can't wait to start publicizing the race. See you on Thursday evening.


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