Skip to main content

2014 Pound the Pavement for PBD-ZSD -- Central Illinois

Jeff and I are hoping to raise money for PBD-ZSD research by hosting a 5K Fun Run/Walk hopefully in September 2014 at Fletcher Park in Mt. Zion. We had hoped that we could have our first Pound the Pavement for PBD-ZSD – Central Illinois event this year, but we will need to wait until 2014.

If we do this it will be a fun run/walk type event but I figured it out and we will need at least $2500 in sponsorships just to break even. First there is liability insurance which is around $500. If we preorder 100 t-shirts at $10 each that is around $1000 and there are guaranteed to be additional costs of running the event such as security/safety provided by the police dept., advertising/publicity, creation of a website which allows for online registration, etc that will add up fast. Lots of details that must be worked out and expenses that must be underwritten by sponsors if we are going to make the run/walk profitable and an annual event.

I believe it can be done but I am very nervous and know I will need help. If you are willing to help be on the team to put this thing together and make it a success and/or would like to learn more about becoming an event sponsor, please let me know. 

More details will be available soon!

Also, please don't forget the upcoming all you can eat pancake and sausage breakfast benefit:
2nd Annual Pancakes for PBD-ZSD
Saturday, May 18th
7-11am at First Baptist Church in Mt. Zion
 Please continue to spread the word. We are hoping for a great turnout again this year! :)


Popular posts from this blog

So much and so little to write about...

When I started this blog I don't think that I could have imagined a time would come in which months would go by without me writing. However, that is what has happened.

So much has changed over the last almost eight years since Ethan's birth and subsequent diagnosis with PBD-ZSD, yet at the same time so much hasn't. Unlike parents of typically developing children we find ourselves still parenting a child with complex medical needs who's developmental skills range anywhere from 9 to 18 months. Ethan still has PBD-ZSD, and right now his uncontrollable seizures are a major issue. We still fight PBD-ZSD the best we can each day with a basket full of medications and supplements and other medical interventions (feeding tube, cochlear implant, AFOs, etc), numerous therapies, school (which Ethan loves), and prayer. We advocate for him and all children and families impacted by PBD-ZSD and related peroxisomal disorders through our involvement in the Global Foundation for Peroxiso…

#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 o…

Faces of Peroxisomal Biogenesis Disorders

This Saturday we are hosting the first annual Pancakes for PBD benefit.  All the proceeds will go to the Global Foundation for Peroxisomal Disorders to help offset the costs for our family and others like us to attend this summer's 2012 Family Support Conference in Orlando, FL.  We hope that this will become an annual tradition and allow us to help raise awareness and money for peroxisomal biogenesis disorders.

Here are just a few of the faces of PBD.