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Sunday, March 24, 2013

Krabbe Translational Research Network

March 6-10:


I was honored to be invited by the Program for the Study of Neurodevelopment in Rare Disorders to speak at the 3rd Krabbe Translational Research Network Annual Conference in Coral Gables, FL. It was an international group of Krabbe researchers, some of which have been studying this disease for over 30 years. I spoke on the perspective of the family including the emotional, social and financial impact of the living with the disease. I was proud to have Kenan in my lap and leaned that for some, this was the first time they had ever seen an affected child. It is profound to think of the impact we can have, as if we were right there in the lab working side-by-side with them; Kenan representing the group of children they are working for. The meeting was sponsored by the Legacy of Angels, a foundation started by Paul and Sue Rosenau, who lost their granddaughter, MaKayla Pike, to Krabbe over a decade ago. http://www.tloaf.org/. It was an honor to meet their family. We were all in the beautiful setting of the historic Biltmore Hotel and spent a few extra days having a spring break. It was a lovely week for our family!

The Biltmore: Coral Gables, FL

On the grounds of Coral Gable's First Congressional Church


       Bill Baggs State Parkhttp://www.floridastateparks.org/capeflorida/