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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
 
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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
 
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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
 
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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
 
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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
 
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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
 
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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
 
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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
 
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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
 
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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
    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
     
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    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
     
    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
     
    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
     
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    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
     
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    4365
    Re: Natural History Study on PBD This will be an international study so ALL families are invited to participate! Dr. Braverman is going to email me a digital copy of the consent form tomorrow!
    pamelaamarshall2006
    Aug 6, 2012
    #4365
     
    4364
    US Regional Coordinators We are working on getting 2 volunteers for each of the nine GFPD US regions. We got a couple of people to "sign up" at the conference, but are looking for
    pamelaamarshall2006
    Aug 6, 2012
    #4364
     
    4363
    Re: Natural History Study on PBD Do you just want USA families? Sent from my iPhone On 6 Aug 2012, at 22:09, "pamelaamarshall2006"
    Jones, Lyn
    Aug 6, 2012
    #4363
     
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    Natural History Study on PBD At the conference Dr. Braverman shared about the importance of the upcoming Natural History Study on PBD. This study would look at all of the medical records
    pamelaamarshall2006
    Aug 6, 2012
    #4362
     
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    GFPD Shutterfly Site All of our families should have gotten an email invite to our private GFPD shutterfly site, http://thegfpd.shutterfly.com/. If you didn't please let me know. I
    pamelaamarshall2006
    Aug 6, 2012
    #4361
     
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    dentistry I hadn't heard anything about this since, but there seemed to be some discussion or interest coming into the conference. What was said or expressed with the
    jmharr@...
    Aug 5, 2012
    #4360
     
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    Intake Form Our friendly volunteers have put together a form for childcare at the conference. If you are attending and have a moment to print/complete prior to your
    Shannon Butalla
    Jul 27, 2012
    #4359
    This message has attachments
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      96 KB
      GFPD intake form.pdf
    4358
    Re: Picture request- 2012 Conference slide show Hi Melissa,   Let me know if these don't come through.   Thank you and cannot wait to see you in Florida!   XOXO   shawnee ________________________________
    shawnee bear
    Jul 23, 2012
    #4358
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    4357
    Picture request- 2012 Conference slide show Hello families! It's that time of year- we need pictures for our GFPD Conference slide show! Since the theme of our conference this year is "Family Support" -
      Melissa Gamble
      Jul 23, 2012
      #4357
      This message has attachments
      4356
      FAQs about PBD Handout Here is the Frequently Asked Questions about PBD handout compiled by the GFPD. http://www.thegfpd.org/wp-content/uploads/2011/03/PBD-FAQ-updated-june-2012.pdf
      pamelaamarshall2006
      Jun 22, 2012
      #4356
       
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      Disney Tickets - Price Increase Dear Families, I just received a call from my contact in charge of group sales tickets at Disney, and he notified me that Disney Prices ARE GOING UP June 27th.
      Shannon Butalla
      Jun 13, 2012
      #4355
      This message has attachments
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        86 KB
        Non-Tax Flyer Disney.pdf
      4354
      UK Families UK Families - I've been looking for additional ways that the GFPD can help our families living outside of the US and Canada. While the GFPD online support
      pamelaamarshall2006
      Jun 8, 2012
      #4354
       
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      4353
      Re: Conference Pricing to increase after June 1 Shannon,   did you receive mine?   Hope all is well.   How is Sam? How are you?   XOXOXO   Shawnee ________________________________ From: Shannon Butalla
      shawnee bear
      Jun 3, 2012
      #4353
       
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      Conference Pricing to increase after June 1 Tomorrow is the final day to register for The 2012 GFPD Family Support Conference at the rate of $100/adult and $50/child ages 3-12. Visit
      Shannon Butalla
      May 31, 2012
      #4352
       
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      final days to register at Early Bird Pricing Just a reminder that you have until June 1 to register for The 2012 GFPD Family Support Conference and receive the Early Bird Pricing ($100/adult, $50/child
      Shannon Butalla
      May 26, 2012
      #4351
      This message has attachments
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