I think your point is very well taken and one that we at the PKD Foundation embraces with open arms. Just recently a member of our local Chapter contacted me about the possibility of once again having meetings focused entirely on support….that one-to-one relationship you referred to that can be so very beneficial for those struggling to cope with the challenges within the world of PKD. While this type of meeting tends to give way to education seminars and business meetings to fulfill other aspects of our mission (fund raising for research, education, advocacy and awareness programs), we should not lose sight of the fact that there is a huge emotional component to this disease that cannot be denied.

Needless to say, basic support meetings in our area are once again being planned and will take place on a regular basis very soon. In fact, it was my own need for emotional support after reeling in this crazy diagnosis that motivated me to connect with the PKD Foundation and begin this chapter nearly 10 years ago. I was desperate to connect with others and better understand the ups, downs, ins, and outs, of PKD…..the good, the bad, and the ugly.

PKD is a journey for sure and can be a lonely pathetic one if going it alone. Thank you for caring to help….we truly appreciate your wise perspective.

Karyn