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The Sienna Foundation –

The Big Toe Knows! Path to a Cure. May 29, 2015. Tomorrow, May 30th, marks three years since Sienna was diagnosed with FOP, the ultra-rare disease impacting 1 in 2 million people, where muscles turn to bone and progressively restrict movement. Most FOP patients, if they make it to adulthood, are essentially frozen in place. I’ve debated how (or if) to acknowledge Sienna’s diagnose-a-versary this year. […]. March 15, 2015. Sienna Makes An Impression. November 24, 2014. This Speech Was Banned. I used to be...

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The Sienna Foundation – | thesiennafoundation.org Reviews
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The Big Toe Knows! Path to a Cure. May 29, 2015. Tomorrow, May 30th, marks three years since Sienna was diagnosed with FOP, the ultra-rare disease impacting 1 in 2 million people, where muscles turn to bone and progressively restrict movement. Most FOP patients, if they make it to adulthood, are essentially frozen in place. I’ve debated how (or if) to acknowledge Sienna’s diagnose-a-versary this year. […]. March 15, 2015. Sienna Makes An Impression. November 24, 2014. This Speech Was Banned. I used to be...
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2 blog
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4 treatments
5 about fop
6 references
7 donate
8 recent posts
9 rare mom
10 3 year diagnose a versary
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The Sienna Foundation – | thesiennafoundation.org Reviews

https://thesiennafoundation.org

The Big Toe Knows! Path to a Cure. May 29, 2015. Tomorrow, May 30th, marks three years since Sienna was diagnosed with FOP, the ultra-rare disease impacting 1 in 2 million people, where muscles turn to bone and progressively restrict movement. Most FOP patients, if they make it to adulthood, are essentially frozen in place. I’ve debated how (or if) to acknowledge Sienna’s diagnose-a-versary this year. […]. March 15, 2015. Sienna Makes An Impression. November 24, 2014. This Speech Was Banned. I used to be...

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thesiennafoundation.org thesiennafoundation.org
1

Treatments

http://www.thesiennafoundation.org/story/treatments

The Big Toe Knows! Path to a Cure. What Preventive Treatments is Sienna Currently Following? O Celebrex (50 mg capsule 2X daily with food – we break it open and dissolve the powder in tart cherry juice as she isn’t old enough to swallow pills). O Ketaprofen Gel (20% concentration) applied directly on a flare-up 2-3X a day. O Singulair (4mg cherry chewable 1X daily at night). O Gastrocrom (4X daily). O Omega 3 gummies. O Vitamin C gummies. 400 mg 3-4X daily, mixed with peanut butter). July 31, 2016. We re...

2

Path to a Cure

http://www.thesiennafoundation.org/about-fop/path-to-a-cure

The Big Toe Knows! Path to a Cure. Path to a Cure. University of Oxford FOP Research Team 2012 Report (University of Oxford, Summer, 2012). Nobel winner gives hope to boy for cure from rare disease. Potent Inhibition Of Heterotopic Ossification By Nuclear Retinoic Acid Receptor Y Agonists (Nat Med, April, 2011). Allele-Specific RNA Interference in FOP Silencing the FOP gene (Gene Therapy, December 1, 2011). Penn Researchers Discover Gene That Creates Second Skeleton (Penn Medicine, April 23, 2006). Today...

3

About FOP

http://www.thesiennafoundation.org/about-fop

The Big Toe Knows! Path to a Cure. O FOP is an abbreviation for Fibrodysplasia Ossificans Progressiva. O FOP is an extremely rare and debilitating medical condition where bone forms in muscles and other soft tissues of the body. O A variation of FOP called Heterotopic Ossification (HO) strikes nearly 65% of wounded military personnel and 10% of orthopedic surgery patients and is triggered by severe injuries. O FOP is a progressive disease and currently there is no cure. July 31, 2016. May 31, 2016. Today...

4

The Big Toe Knows!

http://www.thesiennafoundation.org/about-fop/the-big-toe-knows

The Big Toe Knows! Path to a Cure. The Big Toe Knows! It is our mission to drive awareness of FOP including the critical key image of the malformed big toe, so that other patients can be diagnosed early and surgery can be avoided. It is our goal to have a flier up in every pediatrician’s office, and potentially in every ultrasound technician’s office, so that children with malformations of the big toe can be immediately tested for FOP and begin preventive measures at birth. July 31, 2016. May 31, 2016.

5

Story

http://www.thesiennafoundation.org/story

The Big Toe Knows! Path to a Cure. Sienna was diagnosed with FOP. First Sign of Trouble. Advised that we absolutely did not want to do a biopsy until we had seen a rheumatologist, where Sienna was ultimately diagnosed. Thank goodness for the team at Dallas Children’s. Meeting Dr. Kaplan. On June 13, 2012, we met Dr. Kaplan. At the University of Pennsylvania. Sienna is a dynamic two-year old with a passion for flowers, swings, swimming, animals, Tex-Mex and Mott’s Applesauce Pouches. She has a great sense...

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codymaple.com codymaple.com

The Sienna Foundation - Cody Maple

http://www.codymaple.com/The-Sienna-Foundation

Logo / identity created for The Sienna Foundation. The Sienna Foundation was created by two loving parents whose daughter, Sienna, was diagnosed with FOP, an extremely rare and debilitating medical condition where bone forms in muscles and other soft tissues of the body. During a flare-up (characterized by large swellings), extra bone can form across the joints, restricting movement. National Travel and Tourism Event. Sarasota Family Haven Alliance. Town Hall 2014 Booklet. Town Hall 2012 Speaker Programs.

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The Big Toe Knows! Path to a Cure. May 29, 2015. Tomorrow, May 30th, marks three years since Sienna was diagnosed with FOP, the ultra-rare disease impacting 1 in 2 million people, where muscles turn to bone and progressively restrict movement. Most FOP patients, if they make it to adulthood, are essentially frozen in place. I’ve debated how (or if) to acknowledge Sienna’s diagnose-a-versary this year. […]. March 15, 2015. Sienna Makes An Impression. November 24, 2014. This Speech Was Banned. I used to be...

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