You have two more weeks of Early-Bird pricing for the GFPD Conference. Follow http://www.eventbee.com/event?eid=861976291 to register online. Remember, you...
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Shannon Butalla
dbsamsmom
May 18, 2012 10:40 pm
For those of you still planning to register for the GFPD Conference: This is a reminder that Early Bird Pricing is available until June 1. If you KNOW you are...
4349
Shannon Butalla
dbsamsmom
May 20, 2012 5:26 pm
Thanks a bunch to those who have registered for the conference. Currently, we have 72 total registrations... which doesn't include our professionals. The...
4350
Shannon Butalla
dbsamsmom
May 24, 2012 3:30 pm
For those of you coming to the conference: We have two dentists - one from USC and another from University of North Carolina Chapel Hill - that will be...
4351
Shannon Butalla
dbsamsmom
May 26, 2012 9:33 pm
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...
4352
Shannon Butalla
dbsamsmom
Jun 1, 2012 4:18 am
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 ...
4353
shawnee bear
shawneebear1
Jun 4, 2012 12:25 am
Shannon, Â did you receive mine? Â Hope all is well. Â How is Sam? How are you? Â XOXOXO Â Shawnee ________________________________ From: Shannon Butalla...
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pamelaamarshall2006
pamelaamarsh...
Jun 8, 2012 9:53 pm
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...
4355
Shannon Butalla
dbsamsmom
Jun 13, 2012 7:30 pm
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....
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pamelaamarshall2006
pamelaamarsh...
Jun 22, 2012 6:45 pm
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 ...
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Melissa Gamble
melissabgamble
Jul 23, 2012 8:13 pm
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" -...
4358
shawnee bear
shawneebear1
Jul 24, 2012 12:09 am
Hi Melissa, Â Let me know if these don't come through. Â Thank you and cannot wait to see you in Florida! Â XOXO Â shawnee ________________________________...
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Shannon Butalla
dbsamsmom
Jul 27, 2012 11:18 pm
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...
4360
jmharr@...
lomax53
Aug 5, 2012 7:32 am
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...
4361
pamelaamarshall2006
pamelaamarsh...
Aug 6, 2012 3:31 pm
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...
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pamelaamarshall2006
pamelaamarsh...
Aug 6, 2012 9:09 pm
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...
4363
Jones, Lyn
lynjones12
Aug 6, 2012 9:48 pm
Do you just want USA families? Sent from my iPhone On 6 Aug 2012, at 22:09, "pamelaamarshall2006"...
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pamelaamarshall2006
pamelaamarsh...
Aug 6, 2012 11:02 pm
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...
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pamelaamarshall2006
pamelaamarsh...
Aug 7, 2012 2:27 am
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!...
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Shannon Butalla
dbsamsmom
Aug 8, 2012 2:26 am
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...
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Shannon Butalla
dbsamsmom
Aug 8, 2012 5:47 am
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:...
4368
Kitty Goffaux
kgoffaux
Aug 26, 2012 3:43 pm
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...
4369
pamelaamarshall2006
pamelaamarsh...
Aug 30, 2012 6:56 pm
Greetings everyone, All of the information about the Natural History study is now available on the GFPD website -...
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Shannon Butalla
dbsamsmom
Oct 11, 2012 9:54 pm
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...
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Shannon Butalla
dbsamsmom
Nov 6, 2012 5:56 pm
Hey All, Please see information below. The proceeds are coming to GFPD. J Shannon From: ian tolmie [mailto:tolmie@...] Sent: Tuesday, November 06, 2012...
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Shannon Butalla
dbsamsmom
Nov 9, 2012 7:43 pm
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...
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pamelaamarshall2006
pamelaamarsh...
Nov 28, 2012 8:05 pm
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...
4374
pamelaamarshall2006
pamelaamarsh...
Jan 1, 2013 2:48 am
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...
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pamelaamarshall2006
pamelaamarsh...
Mar 4, 2013 9:12 pm
Important information from GFPD Treasurer, Melissa Gable Hello friends! I have just loaded all of the 2013 GFPD Family & Scientific Conference information onto...
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pamelaamarshall2006
pamelaamarsh...
Apr 11, 2013 7:41 pm
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...
