Skip to main content

Please show your support for th SACHDNC and continued expansion of newborn screenings that can save lives!

The SACHDNC is the only national venue where parents can contribute their experiences and perspectives to the public deliberations on newborn screening. For more information and to show your support/sign the petition, click here.

Please take a few minutes and sign the petition. This is to try to save the SACHDNC -- the group that Dr. Raymond and Ann Moser presented the newborn screening for peroxisomal disorders (ALD, PBD-ZSD, and DBPD) too this fall. Although it has not yet been recommended, they will continue to fight. This screening will save the lives of children born with ALD and will give answers to families of children with PBD-ZSD and DBPD so they can be ready to proactively address the complex medical issues that come along with these diseases.

There is concern that the SACHDNC will be cut. This group is critical to the future of newborn screenings for peroxisomal disorders and other diseases. Newborn screenings can save lives; allow families to seek the medical resources for providing the best quality of lives for their children; and allow families to make informed decisions about future family building if they now know that additional children born would be at risk for having a potentially fatal disease.

Newborn screenings are important and we need the SACHDNC!

Please show your support!

For more information about the SACHDNC visit their website.

Labels

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