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A few ideas that I am kicking around...

I want to raise money for the Global Foundation for Peroxisomal Disorders! The GFPD is the new non-profit organization that is dedicated to helping children and families faced with a peroxisomal biogenesis disorder (PBD) diagnosis. If you haven't checked out our website,, please do.

In the months since Ethan's diagnosis I have bonded with other parents across the country and world for that matter whose lives will never be the same because of PBDs. I have even taken on the role of GFPD Family Registry & Support Group Coordinator and I am very proud to say that we've been able to connect about 150 families from more than a dozen countries (some have kiddos who are still fighting the PBD battle and others have little ones in Heaven). I know it doesn't sound like a lot of families, but you have to remember that this PBDs are very rare genetic disorders.

So, I want to hold two fundraisers each year for the GFPD. Here are my ideas...

1) In the fall I would like to hold a Pound the Pavement for PBDs Family Fun Walk. The Park-Hopkins family from Georgia should get all the credit for this one. Their son Peter, who is now in Heaven, was their inspiration and they have held at least two Pound the Pavement for Peter events to raise money for PBD research. Thank you to the Park-Hopkins family for such a great idea! (Profits from this event would be designated towards research.)

2) In the spring I would like to hold a Pancakes for PBDs event. My pastor has already agreed that we can use the church's fellowship hall for a pancake breakfast event that would raise funds for the GFPD. (Profits from this event would be designated towards the annual GFPD Family & Scientific Conference.)

I know it will take a lot of planning and I'll need a lot of help from my family and friends, but I think it can be done. What do you think?


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Here are just a few of the faces of PBD.