PKU.com Community Discussion Forum Parent support New to Florida. Reply To: New to Florida.

#6641
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vivianrn
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I have finally met with MD Mcrenolds, he is actually a great physician. I love Sandy as well she is such a great wealth of knowledge . I told her about my idea to arrange an organization for children with metabolic disorders, there are many children out there that may not have PKU but have metabolic disorders. It would be great to have something like we had in NY that many children, parents and young adults each year would get together and have a huge picnic the turn out was amazing. I am as I have said before from NY where demographically was much more ava. That is why I believe we really need to be more proactive here in Fl . Although I can say it is difficult due to HIPPA and all the other varibles that come with it.
I am trying so any info as to how to start something would be great. nPS Bre I think your an amazing girl and it is wonderful that you are so involved in this site. You also have said something about a program for schools that require a PKU lunch do you have more info?

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