Dear Mary, I am glad that you are doing so much better - and exercising! I agree on the many benefits of keeping body strong - helps to fight crisises and...
File : bmt4pnh.pdf Description : medical article: BMT of unlrealted donor with PNH...
PNHdisease@yahoogroup...
Feb 1, 2003 2:17 pm
11565
File : donlette.pdf Description : Letter from Marilyn Baker about the PNH Research Award...
PNHdisease@yahoogroup...
Feb 1, 2003 2:17 pm
11566
File : medfin.pdf Description : Financial Resources from AA&MDSIF...
PNHdisease@yahoogroup...
Feb 1, 2003 2:17 pm
11567
File : pnh_basic_explanations.pdf Description : PNH Basic Explainations from AA&MDSIF...
PNHdisease@yahoogroup...
Feb 1, 2003 2:17 pm
11568
File : exhemapn.pdf Description : Successful application of nonmyeloblative transplant for PNH; Experimental Hematology 2001...
PNHdisease@yahoogroup...
Feb 1, 2003 2:17 pm
11569
File : what10-1.pdf Description : What is PNH? By Dr. Rosse (FILE 1 10 pages)...
PNHdisease@yahoogroup...
Feb 1, 2003 2:17 pm
11570
Is there an itinerary for the conference yet. If so could someone point me in the right directions to get a copy. Thanks, Bill Sidford Port Washington, NY AA...
Dear Brandy, From what I hear, Hoosiers are made of some pretty tough stuff:), so I am confident Matt will make it through all this. I will send him a card,...
hi everyone, i just wanted to comment on today's tragedy from the perspective of someone who lives fairly near the cape. my town, new smyrna beach, is about 65...
Bill, Sharon just about has the Registration form done for the conference, which has a little bit of what is expected at the conference. I got a sneak peak at...
... God bless the families and friends who are grieving now. We should all remember them in our prayers, or our own ways. Rebecca Gaskin PNH since 1997 Salem,...
Does anyone in group have/heard of large granular lymphocyte disorder (LGL)? There's a possibility that I have this on top of PNH and Aplastic Anemia - Will...
I have created a folder under the files menu called PNH symposium. In this file I have placed the two pages of the registration form. Please feel free to print...
I am hoping to visit Matt tomorrow at Duke and will give everyone an update. I spoke to Brandy and she said his mom is staying in Durham, so I hope to at least...
Annika, You're peace of mind and positive attitude will make a huge difference in the coming days. Keep re-living the ecstasy you will feel when they tell you...
Sharon or Rebecca, It is good to get the updates on the Conf. do you know yet whether they will pre-publish "briefs" of the Drs.'s speeches, as they did at ...
... They have been invited, from what I remember of an email I got from Dr. Nishimura. And I believe, they confirmed coming, as well as a rep from Alexion. I...
rebecca, have you heard anything from melanie? i tried e-mailing her today and both addresses came back. mellie, if you are out there....write. bill amy, i...
Bill, Thanks for sending the photo of Columbia taking off and giving us your perspective on yesterday's tragedy. My husband is a ham radio operator and his...
Hello PNH Pals, I too get the back spasms when my hemoglobin is low. In fact I just had a transfusion on Friday. My level was 8.1 and before the transfusion...
Amy, I am so sorry you have been going through all of this, but I'm relieved there is no clotting! Please let us know as soon as your other test results come...
eprit1572@...
Feb 3, 2003 2:27 am
11585
Rebecca, Do you remember Sharon saying when they would collect our registration? I thought we might do this prior to arrival so they have a number to prepare ...
eprit1572@...
Feb 3, 2003 2:29 am
11586
Mary, You are in my thoughts and prayers. I know firsthand what stress can do to PNH! When my Father passed away on Father's Day 4 years ago, I was in the ...
eprit1572@...
Feb 3, 2003 2:37 am
11587
... I chatted with her about a week ago on instant message, and she was doing ok. Here is her email address: <A HREF="mailto:mbmoffice">mbmoffice</A>@aol.com...
... I hadn't heard yet that Duke for sure would get the Ecuizumab to do a trial. I know they are hoping for it. As is several of the PNH specialest in the USA...
... Print out the registration form and send it in now. I am sure they would love to get them in asap. There should be an address on them where to send them...
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