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Ragbrai 2017 

We are 6 days out for Ragbrai 2017!  Team Pirate Jack has grown this year, we have 10 brave riders taking on the Iowa weather, hills, and farm country living.  It will be a great time for all.  Jason won’t be able to ride this year due to work and I will only be able … Continue reading

Project Alive

Hello Family and Friends. 5 years ago in late June I vividly recall a conversation with Deb Purcell regarding the research around gene therapy that was presented at a conference, the promises of gene therapy.  Our hope.   Immediately I called Melissa Hogan and the three of us set up a conference call with Dr … Continue reading

Care about Rare

Today is Rare Disease Day. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives and their families.  There are around 7,000 rare diseases and less the 500 of these disease have a treatment option.  50% of rare diseases affect … Continue reading

It’s Cool to be Kind 

5 more days to grab your tshirts. Great holiday gifts for a fabulous cause!   Check out “what’s happening” on this websites main page, look under menu.  Be a part of being kind and cool!   xoxo  J

I celebrate…

Today I celebrate.  I will not look back into the yester years and I will not be fearful for tomorrow.  Today I celebrate you my special, sacred soul.  Gifted not to others but to me.  In this very moment you are 9 now. You hold hands so tenderly and inquisitive.  You move your eyes around … Continue reading

Summer Time

Howdy & Happy Summer! The Fowlers kicked off summer with a wonderful beach vacation close to home.  Staying close to home is becoming a necessity with Jack’s care.  Not to mention we no longer travel light!   This was our first family plus another family vacation.  It was beyond special for us, and hopefully an annual … Continue reading

YouTube 

So yesterday Jack underwent Gtube surgery  as he begins to lose the ability to chew and swallow.  By far one of the hardest transition as Jack has progressed in this disease over the years.  He has tolerated the liquids and currently he is receiving formula feeds.  His body, so far, is doing pretty well.  He … Continue reading

Progression Progression Progression

Progression Progression Progression

It’s been awhile since I last updated my blog. I’m happy to share that while I was away I have realized 3 important things about myself… Well I have learned more then that but I won’t bore you with the facts about finding out that I can go all day with food in my eyebrow … Continue reading