August 31, 2010 at 10:13 pm Leave a comment

The PKD Foundation sponsored a symposium on Sunday during the first day of the International Pediatric Nephrology Association’s Annual Meeting. The meeting was from 12-5 and included two pediatric nephrologists talking about ARPKD, research, and the future of the disease; a neonatologist talking about the NICU experience with ARPKD; a hepatologist speaking about CHF; and myself and two other moms giving our experiences of having a child with ARPKD. How inspiring and empowering. We each spoke for 7 minutes about our ARPKD story, an ARPKD story that has touched us, and our hope for the future. Of course my hope for the future is a cure for ARPKD but since that seems so far away then my hope is for parents to receive all of the information necessary so that they do not feel misinformed about the disease and never feel alone.

I am so grateful that the PKD Foundation set up this symposium and so grateful I was able to participate. On Sunday we spoke to 50 nephrologists and our overall theme was that we want all children with ARPKD to have hope. Hope for survival before they are born, and hope for their future.


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August 2010
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