May 26, 2010
Our Mission
We hope and pray
that the information on this site
will prevent families
from having to experience
the devastation of
Lysosomal Storage Disorders.
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The information is organized into
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May 27, 2010
Today, my Mom and I testified before NJ’s Senate Health and Senior Services Committee in Trenton for the proposed legislation named – Emma’s Day – Emma’s birthday, July 20th, will be celebrated yearly to promote awarness of Krabbe’s and other leukodystrophies
I have attached my Mom’s testimony for all of you to read. It is extremely informative and moving – so much so the Madam Chairperson interrupted my Mom’s testimony and began asking questions about NJ’s current newborn screening law.
A Senator, who is not sponsoring the bill, requested the Committee amend Emma’s Day to not only serve as awareness, but to mandate screening for Krabbe’s in the state of NJ. The Committe voted unanimously to amend Emma’s Day in this fashion and push through the channels of legislative approval.
After the vote, Madam Chairperson pointed to my Mom, looked her eye to eye, and stated “Your grand-daughter is now a part of New Jersey law” I am extremely proud of my Mom and this army of souls that has rallied to act on behalf of Emma.
It was an amazing day, and we are so thankful for the opportunity to testify and represent Emma. Thank you for your continued support. We are not done…. until NJ will have newborn screening for Krabbe’s and other LSD’s in full motion.
With hope,
Kate Daniels
Emma’s Aunt
May 26, 2010
Please support your NJ legislatures on:
AN ACT concerning screening for certain disorders in newborn infants, designated as Emma’s Law, and supplementing Title 26 of the Revised Statutes.
“Emma’s Law”; provides for screening newborn infants for lysosomal storage disorders.
May 26, 2010
Please support your NJ legislatures on the following resolutions that “Designates July 20 of each year as “Emma’s Day” to raise awareness of lysosomal storage disorders.”
- SENATE JOINT RESOLUTION No. 31
- Joseph F. Vitale as Primary Sponsor
- Thomas Goodwin as Primary Sponsor
- Baroni, Bill as Co-Sponsor
- Sean T. Kean as Co-Sponsor
- Loretta Weinberg as Co-Sponsor
- ASSEMBLY JOINT RESOLUTION No. 45
- Patrick J. Diegnan Jr. as Primary Sponsor
- David P. Rible as Primary Sponsor
- Anthony M. Bucco as Primary Sponsor
- Annette Quijano as Co-Sponsor
- Bonnie Watson Coleman as Co-Sponsor
May 26, 2010
State public health programs screen an estimated 4.1 million infants annually for genetic and metabolic disorders. Early detection of these abnormalities can prevent severe disability, mental retardation or even death and may also save states and families money by avoiding financially burdensome medical costs and state institutional services. Comprehensive state newborn screening programs involve more than the initial screening. Diagnosis, follow-up, treatment and evaluation are also vital components to ensure that children with potentially life threatening conditions receive necessary care.
May 26, 2010
What are supplemental screens?
Supplemental screens look for other life-threatening conditions not routinely tested for in the state lab and are available through a few private labs. They can be done before your baby leaves the hospital using blood drops collected from a heel stick. There may be additional costs for these screens. Speak with your healthcare provider for more information. Read the rest of this entry »
May 26, 2010
According to The Human Genetics Association of New Jersey (HGANJ):
The state of New Jersey routinely tests all newborns for a number of disorders that can cause serious health problems. Problems may include mental retardation, disability, or even death when not treated early in life. These disorders are not visible at birth and may not show up during a routine check-up. These can be detected by special blood tests. Read the rest of this entry »
May 26, 2010
There are many types of congenital diseases (present from birth), a large number of which are genetic (inherited). Genes contain information that determines our physical and mental characteristics. Genetic diseases may result when a baby inherits abnormal genes from one or both parents. Many families don’t known about the abnormal genes until they have an infant diagnosed with a genetic disease. Many congenital and genetic diseases have serious complications (such as mental retardation) that can only be prevented if they are recognized and treated as soon as possible after birth.
For this reason, all states recommend certain screening tests for all newborn infants. The list of diseases tested for varies among states. The tests are done using a single blood sample obtained from a small puncture in the baby’s heel.
May 25, 2010
Emma’s Story
Thank you for inviting us to share our story of Emma Rilee Daniels. The journey to her diagnosis is worthy to share with you in this chamber.
My granddaughter, Emma Rilee Daniels was born July 20, 2009, healthy and beautiful. We celebrated her new life at 5 minutes of age. She is my first, and thus far my only grandchild. My son cried with pride and joy while welcoming his new beautiful little girl.
