GFPD Conference Updates

September 15, 2011

We had an amazing first conference in Omaha, Nebraska July 31 – August 2nd!  Thanks to all who supported GFPD Families through individual donations and corporate sponsorships.  From our feedback, EVERYONE went home feeling a sense of community.  There was a tremendous amount of information shared, and many of our families participated in clinic, which took place at Omaha Children’s on Tuesday, August 2nd.

 

It is difficult to put our event into words, but if it had to be summarized into one, I’d use “home”.  It felt good to be with people who understood the ins and outs of every aspect of our children — both medical professionals and parents.  Families of children who have passed away from the disorder got a chance to reconnect with others and a part of their lives that they don’t ever want to forget.  Holding a child similar to theirs brought back memories that evoked so much emotion… many tears, but heart-felt and healing.  Others who had never met another child with PBD had a glimpse of what this path may look like as their child ages.  We had participants as young as four months and as old as 29 years.  It provided hope for our young parents who had been given less than encouraging forecasts of their child’s future.

 

We hope to have even more participation at our next event.  GFPD will host its 2012 conference in Orlando, Florida July 30 – August 2 at the Floridays Resort Orlando.  Follow our conference tab for more information on how to register.

 

In a few weeks, we will be celebrating the first anniversary of the incorporation of GFPD.  It has been an amazing year, and we look forward to growing this organization to impact more families faced with the devastating effects of Peroxisome Biogenesis Disorders.  We invite you to support our cause by making a tax deductible contribution in honor or in memory of the loved one that brought you to us.

Warmest regards,

 

Shannon Butalla, President

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