So close

October 23, 2009 at 5:37 pm Leave a comment

I was this close to being interviewed today by ABC about having children with chronic kidney disease. It was all very exciting. I was even thinking about what I would wear (b/c you know it’s all about me looking good!). But it didn’t pan out. There is this PR person who has a sister in law with PKD. She is doing the Foundation a favor by trying to book PR opportunities in NYC. The Tri-State PKD Walk is Sunday and they are trying to promote it as well as PKD. Then this week an article came out in the New England Journal of Medicine about children with chronic kidney disease and some blood pressure medication slowing down the progression of the disease. So this PR person approached this medical journalist at an ABC affiliate in they city and it was almost going to happen but then it didn’t.

Just the thought of going on tv to talk about ARPKD is exciting.  I was thinking about all of the babies who have died from ARPKD and all of the kids out there right now who have the disease and how being on tv could really help raise awareness and much needed funds for research. I really, really hope we can get some national coverage on this disease and soon. As I think I mentioned I sent out an email to everyone who was registered as “walking for ARPKD” and in return I received so many emails. And many of them were from moms and dads who have had babies die from the disease. There are so many babies I need to add to my remembrance section. I fear the remembrance section could be as long as a whole newsletter. I don’t fear that it will take over the newsletter for the sake of the newsletter but fear there are just too many names of babies who have died from this disease. That saddens me. Of course there are too many people living with ARPKD as well. I kept thinking about being on tv and talking about how there is no treatment and no cure for ARPKD and that the transplant is not a cure….Maybe someday……

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a call and an email Moody

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