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To My Camp Counselors

I feel very fortunate to have grown up less than 10 minutes away from an organization that has remained close to my heart: Paul Newman’s The Hole in the Wall Gang Camp (THITWGC) in Ashford, Connecticut. It gave me all that I needed to thrive as a young girl with a life-threatening condition. Camp subsequently changed my life without me

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How Flare-ups Affect Me

Living in a body with FOP is like being forced to ride a completely different roller coaster every day with no time in between to catch your breath. I never know when the next drop (unexpected flare-up) might be, if I’ll stop going in loops (seemingly never-ending pain), or if it’ll be a smoother ride for a while. At the

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2015 Highlights

Happy New Year!! These were some of my favorite days of 2015. 1. June 13th – mini photo op with my Boston-area friends before we watched our favorite music duo, Karmin, open for Lindsey Stirling! So many laughs, photos, and inside jokes. 2. September 8th – had a good day where I felt more like myself following so many weeks

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Traveling to California

It’s almost been two months since I traveled by myself to Southern California! I had an amazing time, but I can wholeheartedly say that it was a miracle I was able to fly. Up until the night before traveling I was still experiencing a lot of pain (refer to my last blog post here) and felt very discouraged. I had planned this

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  • Ive been home for two days and Im already planninghellip
    4 hours ago by p0sitivity I’ve been home for two days and I’m already planning my next trip to California ‍♀️  #typical 
  • Zoo day
    5 days ago by p0sitivity Zoo day ♥️
  • I was interviewed and filmed yesterday for an upcoming projecthellip
    1 week ago by p0sitivity I was interviewed and filmed yesterday for an upcoming project that the International FOP Association (IFOPA) is putting together! It brought back all the memories of being filmed for CNN last year ❤️ so grateful to be able to share my story and help raise awareness of FOP!  #fibrodysplasiaossificansprogressiva  :…
  • Yesterdays adventures
    2 weeks ago by p0sitivity Yesterday’s adventures
  • 2 weeks ago by p0sitivity
  • Today is the first annual FOP Awareness Day in Connecticut!hellip
    2 weeks ago by p0sitivity Today is the first annual FOP Awareness Day in Connecticut! my mom shared our story during the church service and I was able to answer a few questions afterwards. So thankful for the wonderful people I was able to share this day with - the next couple of weeks as…
  • Happy 21st birthday to my best friend!!! Im beyond proudhellip
    3 weeks ago by p0sitivity Happy 21st birthday to my best friend!!! I'm beyond proud of you and so thankful to know you. I love our friendship and all of the crazy adventures we've shared so far. Our memories are truly some of my very favorites. Whether we're wandering the streets of Portland, ME during…
  • Cabin circle  the true magic of Camp I havehellip
    1 month ago by p0sitivity Cabin circle - the true magic of Camp. I have so many childhood memories of walking up this path hand in hand with my new friends and counselors I adored. We'd chant the cabin cheers we memorized, determined to be the loudest so we could be the first ones into…
  • My baby Prancer turns 14 today!! Ive been feeling especiallyhellip
    2 months ago by p0sitivity My baby Prancer turns 14 today!! I've been feeling especially sentimental and emotional lately thinking back to his adoption day in 2003. I was only 10 when we got him & I'm now 24. He's been with me in every Connecticut town we've lived in. He was my greatest comfort…
  • 2 months ago by p0sitivity

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