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Rare Mom | Rare Mom
http://raremom.com/2013/06/10/rare-mom
Sienna’s Flower Garden. June 10, 2013. This entry was tagged frontpage. Leave a Reply Cancel reply. Enter your comment here. Fill in your details below or click an icon to log in:. Address never made public). You are commenting using your WordPress.com account. ( Log Out. You are commenting using your Twitter account. ( Log Out. You are commenting using your Facebook account. ( Log Out. You are commenting using your Google account. ( Log Out. Notify me of new comments via email. 4 Years of F.O.P.
A Day at the Beach | Rare Mom
http://raremom.com/2014/05/26/a-day-at-the-beach
Sienna’s Flower Garden. May 26, 2014. A Day at the Beach. Beaches are magical places in my book. Natural beauty, warm sand, cool water, and best of all, soft surfaces all around make it one of the few “safe” places where Sienna can play like every other kid. 8221; and gave me a smile as if to say “kids! 8221; and I smiled back, secretly celebrating that for maybe the first time ever, I wasn’t the first mom to yell “be careful! 8221; (I was about to, though…). When it finally came time to pack up our beac...
November | 2014 | Rare Mom
http://raremom.com/2014/11
Sienna’s Flower Garden. Monthly Archives: November 2014. November 24, 2014. Sienna Makes An Impression. Working “Vacation”. 4 Years of F.O.P. A Pile of Mother’s Day. Sienna Makes An Impression. This Speech Was Banned. I’m not leaving without blood. Two Years of Progress. On A Pile of Mother’s …. On A Pile of Mother’s …. Jeanne on Catching up. Kelly sanderson on Sienna Makes An Impressio…. Sharon on Sienna Makes An Impressio…. Create a free website or blog at WordPress.com. Blog at WordPress.com.
This Speech Was Banned | Rare Mom
http://raremom.com/2014/09/10/this-speech-was-banned
Sienna’s Flower Garden. September 10, 2014. This Speech Was Banned. I used to be afraid to speak in public. I was set to give a new speech this Friday. It was a new challenge and one I have never taken on before: speaking to Sienna’s class of 4-year-olds about Sienna and FOP. For the first time in a long time, I was a little nervous about a speech. What would it be like to speak to a room full of 4-year-olds? Would they sit still? Would someone get my joke and volunteer that they have X-ray vision? There...
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Sienna’s Flower Garden. July 30, 2016. Working “Vacation”. Working Vacation Stop 1: FOP Natural History Study. We had been waiting for months (actually, nearly a year now! For an east coast center to open for children, and finally just decided to visit UCSF and tie in a family visit as well (my sister and her family live outside of SF). Here is Sienna on the trip out, flying in style! Pictured below during the process – she launches herself off my knees and paddles as far as she can). Or blood sample....
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Donate
http://www.thesiennafoundation.org/donate
The Big Toe Knows! Path to a Cure. YOUR DONATION IS CRITICAL. Of the entire FOP research budget is provided by family and friends of FOP patients. You can do to eradicate FOP and preserve Sienna’s bright future is donate to support FOP research through Sienna’s Flower Garden on behalf of the IFOPA*. The IFOPA is a registered 501(c)(3) charitable organization. CLICK HERE to donate for Sienna via Sienna’s Flower Garden*. Click Sienna’s Piggy Bank to Donate via Sienna’s Flower Garden *. Additionally, it mig...
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...
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...
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...
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...
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.
References
http://www.thesiennafoundation.org/about-fop/references
The Big Toe Knows! Path to a Cure. Overview of FOP (UCSF Benioff Hospital). Overview of FOP (How Stuff Works). How Can A Genetic Mutation Cause Muscle to Turn Into Bone? Scientific American, December 2, 2009). A Few Hundred People Turned to Bone (The Atlantic Magazine). Hear Dr. Kaplan speak about FOP facts, insights and treatment methods:. Youtube=http:/ www.youtube.com/watch? FOP Treatments (How Stuff Works). 2012 FOP Annual Report (Perelman School of Medicine, May 7, 2012). July 31, 2016. May 31, 2016.
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July 17th, 2015. May 12th, 2015. Painting For Social Awareness: Adesina Sanchez. March 16th, 2015. Concept by Joshua Viers. January 9th, 2015. July 17th, 2015. My latest spotlight features New York artist Rami Baglio. Her realistic paintings are done using oil and center around archetypal characters and consists primarily of portraits of people in her life. In this interview Rami goes over her method and briefly discusses the story . Continue Reading. Painting For Social Awareness: Adesina Sanchez. Chipz...
Rare Module
July 17th, 2015. May 12th, 2015. Painting For Social Awareness: Adesina Sanchez. March 16th, 2015. Concept by Joshua Viers. January 9th, 2015. July 17th, 2015. My latest spotlight features New York artist Rami Baglio. Her realistic paintings are done using oil and center around archetypal characters and consists primarily of portraits of people in her life. In this interview Rami goes over her method and briefly discusses the story . Continue Reading. Painting For Social Awareness: Adesina Sanchez. Chipz...
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Rare Mom | Raising awareness for F.O.P.
Sienna’s Flower Garden. May 28, 2015. March 14, 2015. November 24, 2014. Sienna Makes An Impression. September 10, 2014. This Speech Was Banned. June 30, 2014. I’m not leaving without blood. May 30, 2014. Two Years of Progress. May 26, 2014. A Day at the Beach. Sienna Makes An Impression. This Speech Was Banned. I’m not leaving without blood. Two Years of Progress. A Day at the Beach. T minus 7 days. 1 Week Until the Marathon: Building Suspense. Kelly sanderson on Sienna Makes An Impressio….
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Saturday, March 19, 2011. Jeanie and I are enjoy a bite of breakfast and some coffee before loading the cycle up for our trip to Amicalola Falls today. First, the check list of what we need to take is nearly complete. Camera; check, Handouts; check, Pen; check, Snacks; check, Water; check. This ride will take about 2 hours and we will be joined by two or three other bikers. Looking forward to it. Links to this post. Thursday, October 15, 2009. It is time to be patriots. Stand up for America. That will li...
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