Loading ...
Sorry, an error occurred while loading the content.

Messages List

4388

Family Stories section on the GFPD website Would you like to share your child(ren)'s story with other families and/or those who visit the GFPD website? We have a very special "Family Stories" section on

pamelaamarshall2006
Sep 6, 2013
#4388
 

Messages List

4386

You still have time to register for the 2013 GFPD Conference! Message from Shannon Butalla, GFPD President For those still considering coming to the conference, the group rate at Embassy Suites has been extended. You can

pamelaamarshall2006
Jul 9, 2013
#4386
 

Messages List

4385

Have you submitted your child(ren)'s mutations to the GFPD Family Re If you have had your child(ren)'s mutations identified -- meaning you know the exact mutations -- not just what PEX gene they are located in, and have not

pamelaamarshall2006
Jun 14, 2013
#4385
 

Messages List

4381

Have you registered for the GFPD 2013 Family & Scientific Conference Just as a reminder: We are closing in on the final days of early registration pricing for the GFPD Conference in Lincoln, NE this July. Please be sure to

pamelaamarshall2006
May 25, 2013
#4381
 

Messages List

4380

Seeking pictures of "our" kids for two upcoming events Hi, friends! Next month we will be holding our 2nd Annual Pancakes for PBD-ZSD event. Last year I had pictures of our kids on all of the tables so that those

pamelaamarshall2006
Apr 11, 2013
#4380
 

Messages List

4377

GFPD 2013 Conference Information Important information from GFPD Treasurer, Melissa Gable Hello friends! I have just loaded all of the 2013 GFPD Family & Scientific Conference information onto

pamelaamarshall2006
Mar 4, 2013
#4377
 

Messages List

4374

Please help us keep all families impacted by PBD-ZSD connected. Hello everyone: My name is Pamela Marshall and I am the Registry and Support Group Coordinator for the Global Foundation for Peroxisomal Disorders (GFPD). GFPD

pamelaamarshall2006
Dec 31, 2012
#4374
 

Messages List

4373

Global Foundation for Peroxisomal Disorders (GFPD) Newsletter If you would like to receive GFPD's newsletters and haven't already shared your email and/or mailing addresses with us, please visit our website to sign up and

pamelaamarshall2006
Nov 28, 2012
#4373
 

Messages List

4372

Tell Congress to Protect the NIH & FDA from Devastating Budget Cuts All, Please read below. If you click on the link, you can write a paragraph or so adding your personal story to the information already put together. It will

Shannon Butalla
Nov 9, 2012
#4372
 

Messages List

4371

FW: Happy Holidays from TolmieToffee! Hey All, Please see information below. The proceeds are coming to GFPD. J Shannon From: ian tolmie [mailto:tolmie@...] Sent: Tuesday, November 06, 2012

    Shannon Butalla
    Nov 6, 2012
    #4371
    This message has attachments

    Messages List

    4370

    Re: GFPD October 2012 Newsletter If you didn’t get the newsletter today, be sure to email Pamela Marshall (registry@...) to ensure you are added to the list. J The Global Foundation

    Shannon Butalla
    Oct 11, 2012
    #4370
     

    Messages List

    4369

    Natural History Study Update - August 31, 2012 Greetings everyone, All of the information about the Natural History study is now available on the GFPD website -

    pamelaamarshall2006
    Aug 30, 2012
    #4369
     

    Messages List

    4368

    Re: Natural History Study on PBD Hi Pamala, Sorry I am very behind in my emails. We will certainly participate in the study and if you still need someone from South Atlantic with Classic ZS

    Kitty Goffaux
    Aug 26, 2012
    #4368
     

    Messages List

    4367

    video link I was asked to share the 2012 Conference video that I created from the photos you submitted prior to the conference. You can access it by following this link:

    Shannon Butalla
    Aug 7, 2012
    #4367
     

    Messages List

    4366

    Thank you & post conference survey Greetings GFPD Families! It is hard to believe that the 2012 GFPD Family Support Conference has come & gone. With a year of preparation, Melissa and I hope

    Shannon Butalla
    Aug 7, 2012
    #4366
     
    View First Topic Go to View Last Topic
    Loading 1 - 15 of total 4,388 messages