Skip to main content

Please Support Illinois HB 2790!

Below is an email from Illinois Representative Laura Fine. Rep. Fine is introducing legislation that will add the test for ALD (which also identifies other peroxisomal disorders such as PBD-ZSD and DBPD) to Illinois' newborn screening panel. In her email she outlines ways that both IL residents and those living elsewhere can show their support for this legislation. Identifying children born with ALD (boys and girls who are "carriers") will save lives! Identifying children born with PBD-ZSD or one of the other peroxisomal disorders will give parents the information they need to seek out the best interventions and treatments for symptoms as they arise. All the families who are made aware of one of these diseases will have the knowledge needed to make informed choices about future family building and be able to let other family members know if they may be at risk for either having or passing on these diseases to the next generation. Please take a quick moment to show your support.

Thank you!

Dear all,

My bill has posted to committee and people can now sign on as proponents.  We have 34 co-sponsors so far!  

I would appreciate it if you would ask the ALD community to do two things:

1) Illinois residents, should contact their state representative and state senator and ask them to support HB 2790.  If they don't know who their representatives are, they can go to the following website to find out,

2) All supporters should go the Illinois General Assembly's website (instruction below) and sign their name or organization as a proponent. Proponents do not have to be from Illinois.
To register as a proponent, please go to: 

-Scroll down the list of bills and find HB 2790.
-Click on Create Witness Slip on the far right.
-Fill out the slip. 
-if filing a written testimony, please select "Written Statement Filed" and email your testimony to
-If attending the hearing and would like to testify, should there be an opportunity, please select "Oral".  
-If attending the hearing, but don't want to testify please select "Record of Appearance Only".
-If not attending the hearing and just signing on as a proponent, please select "Record of Appearance Only".

Again, the bill will be heard in:
Human Services Committee 
Wednesday, March 25 at 8:00 a.m.
Room C-1- Stratton Building in Springfield (Stratton building is the building right next to the State Capitol Building).

If you know of others who will be attending the hearing, please ask them to email or call me.  My chief legislative aide, Shiva, will be in Springfield as well and can be reached on her cell at 773-875-4158.   

For those who are planning to testify, please meet in my office at 7:30 on Wednesday, March 25 for a briefing.  My office is at 31-E Stratton Building, Springfield.  

If you are driving and needing to park, once you get to the Capitol, on 2nd Street, take a right onto Edwards Street, on the corner of Edwards & College, there is Boone’s Saloon and the visitor’s parking is directly behind Boone’s Saloon.

Thank you very much for all your help.  

Laura Fine
State Representative, 17th District

1812 Waukegan Rd., Suite A
Glenview, IL 60025
Tel:  847-998-1717
Fax: 847-998-1707


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.