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PNH Paroxysmal nocturnal hemoglobinuria

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  #1  
Old Tue Mar 3, 2015, 02:38 PM
GoodDay5150 GoodDay5150 is offline
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Pnh Walk For 2015?

So is there an annual walk for PNH this year? I was just wondering.

Thanks

Mario
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Old Tue Mar 3, 2015, 03:51 PM
Neil Cuadra Neil Cuadra is offline
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I expect that they'll announce the Walk for PNH date in the coming months, but I haven't seen anything so far.

The 2014 Walk for PNH was Sunday, September 21, 2014 and raised over $35,000.
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Old Wed Mar 4, 2015, 01:53 PM
GoodDay5150 GoodDay5150 is offline
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Hi Neil, thanks for the quick reply. I know that you're an active participant here and with AA/MDS.ORG activities. Myself and other bone marrow failure patients appreciate your involvement. I had a BMT 3 yrs ago for PNH, so I know all about the dr's appts, meds, bone marrow biopsies, etc etc.!!! And of course, the time involved in the care of such patients.

Mario
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Old Wed Mar 4, 2015, 04:55 PM
Neil Cuadra Neil Cuadra is offline
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Mario,

We appreciate your involvement too. We've read your posts about the long time it took to diagnose you before your transplant, and we thank you for giving advice to other PNH patients and family members in the forums, as you've done regularly since you joined.

Have you traveled to New York for the PNH Walk, or would you plan to?
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Old Wed Mar 4, 2015, 05:18 PM
GoodDay5150 GoodDay5150 is offline
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Hi Neil. I was actually diagnosed quickly. I simply ignored my symptoms for a very long time until they got so severe that I ddnt have a choice. I would consider attending a PNH walk anwhere in the US. I did attend the PNH conference in Denver last June. That was my only official gathering that I have attended so far.
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  #6  
Old Fri Jul 24, 2015, 01:15 AM
Marrowforums Marrowforums is offline
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The Walk for PNH 2015 has been announced.

It will take place Sunday, September 20, 2015 at Riverside Park in New York and registration is open.
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