Skip to main content

Raising Money for the GFPD Conference Scholarship Fund


GFPD's Family & Scientific Conferences are a lifeline for our family and families like ours.
  • Families impacted by PBD-ZSD learn about the latest updates in PBD-ZSD research and treatment options from the top PBD-ZSD specialists in North America. Additional topics such as options for family building after a PBD-ZSD diagnosis, medical & educational advocacy for children with PBD-ZSD, pediatric palliative care, and self-care are also covered.
  • Children impacted by PBD-ZSD have the opportunity to be seen by the PBD-ZSD experts in the GFPD/PBD-ZSD clinic held at Omaha Children's Hospital. While we know that these doctors don't have any "miracle" cures, it is important for us to know that Ethan is being seen by doctors who specialize in PBD-ZSD and that we know that we are doing everything we should be doing for our son. The information that is collected from the children who attend the clinic, such as medical history, past and present symptoms, DEXA scans, OCT scans, blood work, etc., provide the doctors with much needed data to help develop a greater understanding of this complex disease.
  • Parents who have had a child(ren) pass away from PBD-ZSD get the chance to embrace others who truly understand their grief and new "normal."
  • Families get to spend a couple of days surrounded by other families who understand this disease and "get it." Individuals who have spent months or maybe even years connecting online and/or on the phone get an opportunity to actually meet in person. In the past we have had families from as far as Australia and Iran attend our conferences!

The cost of attending the GFPD Family & Scientific Conference can vary greatly, depending on travel costs and the size of family, however for a family of 3 like ours who will be driving from IL to NE we estimate that it will cost us roughly $1,000. Families traveling from outside of the US can easily be looking at costs of $5,000 or more. As you can imagine, many families simply can not afford to attend the conference without outside support.


I'm asking for you to consider making a tax-deductible donation to the Global Foundation for Peroxisomal Disorders that will help our family and others like us attend the GFPD Conference. Since Ethan's diagnosis the GFPD has become a second family to us. GFPD connects more than 200 families from over 20 countries and it is my desire that any family who wants to attend the GFPD conference would be able to do so without it being a financial burden.


To learn more about how you can donate online or by mail, please visit the GFPD website.
Labels:

Comments

Post a Comment

Popular posts from this blog

"God Chooses Mom for Disabled Child" by Erma Bombeck

I don't think this is exactly how it works, but I had to share anyway. I believe with all my heart that God does not make mistakes, and although I will fully admit that it hurts my heart that any child is born (or develops) disabilities and/or life threatening illness, I know that God is sovereign and that He has a divine plan (even when we don't understand it!). I believe that God brought Jeff and I together and that He knew Ethan even as he was growing inside of me. While this is not the journey we would have dreamed of or chosen, and there are going to be times (and have been already) when we struggle, stumble and fall  it is our hope that in the end that we will bring glory and honor to the Lord.  God Chooses Mom for Disabled Child Written by Erma Bombeck Published in the Today Newspaper Sept. 4th, 1993 Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothe...
Post a Comment
Read more

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. 
1 comment
Read more

Here we go again!

Yesterday, our family got to take another trip to the ER. Just a little after 7am, after I had fed Ethan breakfast and gave him his morning medications, he and I came into the living room to play before we had to get ready to leave for school. Ethan had 5 seizures, each lasting 10 to 15 seconds, back to back. Jeff had not yet left for work so I had him get the Diazepam, Ethan's rescue medication, and we gave it to him. The Diazepam is supposed to stop the cluster seizures, but it didn't. The seizures continued and didn't show any signs of stopping so the three of us packed up and headed off to the ER. By the time we arrived at the ER the drowsiness that is a side effect of the Diazepam was very evident, and although Ethan wasn't sleeping, he was definitely out of it. He had another small seizure shortly after we got to the hospital while we were being checked in. Once again his vitals were monitored and blood taken. The doctor spoke on the phone with our neurologist...
Post a Comment
Read more