PKD Foundation

March 2, 2012 at 11:48 pm Leave a comment

I flew into Kansas City last night for a weekend of meetings with the PKD Foundation. The meetings will start tomorrow but to be in a room full of volunteers who either have PKD or a family member with the disease is very empowering. We are all here for the same reason….. To find treatments and a cure for this disease.

One ironic thing is that the foundation is based out of KC and always has been. And ironically I grew up in KC as did my parents and we had never heard of the disease nor the foundation before the boys were diagnosed. It’s just plain weird!!!

As I’ve said before this disease is very overwhelming and I often feel helpless. But being involved with the foundation makes me feel like I am doing something meaningful with their diagnosis. It empowers me and helps me feel I am advocating more for the boys. The more I can learn and the more I can do for them in regards to their disease is really all I can do at this point.

So in honor of March being National Kidney Month I thank the PKD Foundation for first of all being there for me, second of all helping me in so many ways, and third of all for empowering me. And most importantly for introducing me to those wonderful ARPKD moms who have come into my life and always will be.


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In search of a kidney Loss

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