Archives for December 2012

Santa visits Sophia……

An amazing family friend contacted Santa and told him all about Sophia. Immediately upon hearing about what a special little girl she is he requested to visit Sophia at her home!!! Sophia loves Santa....loves the stories and the decorations and just the symbolism that Santa gives .....not just presents but gives his heart and time and love!!!! Santa to Sophia is not just about getting presents.....its about showing love, taking that extra time for a hug, or another story even though you read ten … [Read more...]

The 12th Hour!!!!!!

Recently we traveled to Washington D.C. to participate in the public RAC (RECOMBINANT DNA ADVISORY COMMITTEE) meeting on behalf of Dr. Kaspar's Gene Therapy for SMA....We have been supporting, funding and following Dr. Kaspar's program for just about the last 3 years. We knew this meeting would be step 1 of 3 critical steps that Gene Therapy must go through to move to clinical trials. Once we heard the date announced we quickly contacted the NIH to report that we would like to speak and present … [Read more...]

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