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 Fu and Dr McCarty at Nationwide Children’s Hospital in Ohio to express our interest in MPSII gene therapy for MPSII.   I sit here, 5 years later in awe of the work that has been done and the funding that has been provided.  Never Give Up.  And now we are in the home stretch, the final inning, the running to home base (baseball is on my tv right now).  We are ready to launch a final push for human trial, with this funding trial will happen late 2017, early 2018.  WOW!

To hit this home run we are launching our final fundraising efforts to generate 2.5 million dollars.   WE GOT THIS!

With the momentum of a newly diagnosed families and their gifts, We Are Caravan, has interviewed and filmed families living with rare disease, Hunter Syndrome.  This will provide a glimpse into our lives, a different but challenging and sober lives.  The life of raising a child in an uncommon world.  Loving your child in every single moment.  Dealing with persistent fear.  All awhile putting efforts and energies to save their lives.  My life. It is with great honor that our family is featured in this documentary series that will begin releasing next week!  You will not want to miss this series.

Please watch the trailer…

PA Trailer

 

Stay tuned…

 

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