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#PauseForPBD -- October 5, 2017

October 5th is a special day for our family as we celebrate #PauseForPBD, the annual awareness day for The Global Foundation for Peroxisomal Disorders (GFPD). [Jeff's birthday also happens to be October 5th but he doesn't seem to mind sharing it with #PauseForPBD day.]
Our son, Ethan, is 7 years old and is one of less than 200 children, known to the GFPD, living worldwide with Peroxisome Biogenesis Disorder (PBD).  Ethan has a contagious smile and laugh, despite the fact that PBD has caused him to have severe cognitive and physical delays. Peroxisome Biogenesis Disorder (also known as Zellweger Spectrum Disorder), is a rare, genetic condition affecting multiple organ systems in the the body. PBD is generally fatal in childhood. As a parent, it is difficult to express the sense of loneliness and feelings of isolation that enter your life when your child has a rare genetic disease that most people have never heard or and has no cure.

However, #PauseForPBD, is a day that brings our family hope as we celebrate The Global Foundation for Peroxisomal Disorders (GFPD).  The GFPD is an international non-profit organization incorporated in 2010, that raises funds for research, promotes awareness, and supports families affected by PBD and related peroxisome disorders. On October 5th, we are commemorating the GFPD’s annual awareness day, #PauseForPBD, and celebrating all that the GFPD has accomplished in the last 7 years in moving towards a cure for PBD.  Most importantly, #PauseForPBD celebrates the beautiful children affected by this rare, terminal condition.

Raising public awareness truly makes a difference.  It gives families hope and can lead to new, life-saving treatments.  I encourage everyone reading this to get involved by visiting the GFPD website: www.thegfpd.org. or finding us on Facebook and twitter @globalfoundpd or Instagram @thegfpd to learn about #PauseForPBD and what you can do to support individuals and families impacted by PBD-ZSD and related peroxisome disorders.

The purpose of #PauseForPBD is to share, support, give, and remember. There are so many ways to do this. Here are just a few examples:

 Pause for individuals and families affected by PBD-ZSD and related peroxisomal disorders.
Release a balloon, say a prayer, light a candle, meditate, have a moment of silence... be creative! Reflect, honor and remember a loved one impacted by PBD. Share your experiences in words, photos or videos here and on your own Facebook, Instagram or Twitter accounts and be sure to #PauseForPBD Thursday, October 5, 2017!

 Tell others about the GFPD. 
Help spread the word about what the GFPD is doing for families impacted by PBD-ZSD and related peroxisomal disorders. #GFPDisFamily #GFPDisResearch #GFPDisHope

Wear what you care about. 
Purchase a limited edition #PauseForPBD t-shirt or other GFPD merchandise from the GFPD shop at: www.thegfpd.org/shop. Shirts ordered by Thursday, September 28th will arrive by October 5th!

Buy cookies! 
For the second year in a row, OKCookiemomster is supporting the GFPD with 2 cookies with 100% of the proceeds going toward the GFPD! The last day to order fro SHIPPING outside of Tulsa is Wednesday, September 27th! Call 918-551-6888 to order or email okcookiemomster@gmail.com

 Donate! 
Online or by mail. 
The Global Foundation for Peroxisomal Disorders
5147 South Harvard Avenue
Suite 181
Tulsa, OK 74135


Thank you!
Jeff and Pamela 



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