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Renie Moss
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30 followers
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Renie Moss's posts

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MEK Trial Restaging Visit results from November 2016


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Long Overdue post
We have become so accustomed to social media now that we rarely post on our family blog anymore.  The Moss family has been busy living life to the fullest, with both children doing well in second and fifth grade now.  Philip enjoys varsity level chess and i...

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Shrinkage!
We have just returned from our first restaging week of evaluation at the National Institutes of Health in Bethesda, MD.  To say that our hearts and minds have been preoccupied would be an understatement.  All of our prayers and focus these past four months ...

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End of the Year Update
It has been sometime since we updated everyone on our family's activities, especially related to Little Philip's progress since enrolling in the MEK trial through the NIH .  For those of you who follow us on facebook, you know it has been a challenging seme...

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2015 Alabama NF Walk - Donate or Register Today!
9 days until the 2015 Alabama NF Superhero Walk. Neurofibromatosis has caused a lot of changes in our family in the last year. In November of 2014, we were humbled to receive the 2014 CTF Strength and Honor Award at a beautiful Benefit in Detroit that raise...

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AZD6244 Clinical Trial - We are In!
We have been so incredibly busy over the last month that we have failed to share our exciting news.  At the end of August, we received the call that Philip had been selected to enroll in the AZD6244 clinical trial for inoperable plexiform tumors.  We were o...

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I am pleased to share with you the 2014 Children's Tumor Foundation​ Annual Report.  Within these pages are messages of hope through reported advances in research made possible through your ongoing support.  Within these pages, I see the names and faces of ...

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Conversation in a Canoe
I intended to share this story months ago but in retrospect, I am thankful for God's timing that delayed me from sharing it then.  I sat down several times over the last few months, intending to share this story, but various life circumstances prevented me ...

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Wait Listed
We wanted to update you on Little Philip's health and I will try to be as brief as possible.  Before I do, I want to start by thanking each and every one of you for your continued support through your prayers and encouragement.   A reminder that there is no...

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Chemotherapy Stopped
Today's oncology appointment was important because we knew the disappointing news we were going to receive. Philip's situation is not without hope but the hope is now in getting selected for a clinical trial. The latest NCI volumetric analysis of Philip's t...
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