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jmeb17
 Post subject: Re: New Member
PostPosted: Wed Mar 04, 2009 9:43 am 
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Joined: Tue Jan 27, 2009 1:16 pm
Posts: 66
Location: Denver, Colorado
Hello Kathy, welcome to the forum! You find a lot of great support here and also a lot of knowledge!
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Burke Family
 Post subject: Re: New Member
PostPosted: Wed Mar 04, 2009 2:19 pm 
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Joined: Sun Jan 25, 2009 6:22 pm
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Welcome - I am a new member too. I have 3 daughters with MPS III C who had been doing pretty well until recently. We increased the genestein to 10 mg after talking with the Dr in Poland but think that may have contributed to my youngest having a seizure - her 2nd - so we went back down to 5. Just thought you would like to know. Nancy
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Elizabeth Schuepbach
 Post subject: Re: New Member
PostPosted: Wed Mar 04, 2009 6:07 pm 
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Joined: Fri Mar 05, 2004 2:26 pm
Posts: 1839
Location: Bern,Switzerland
By the way, I have heard from specialists that it would only need 10% of enzymal activity for things to function normally, so I believe protein chaperoning would indeed be very significant. I hope they have success in this area very soon. :praying

_________________
lots of love and good wishes

Elizabeth, Peter, Daniel (MPSIIIA born Jan 91) and Samuel (born Nov 93)and Anna Nigina (born Nov 01)

http://www.caringbridge.org/visit/danielschuepbach

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