Cystic Fibrosis Institute

cysticfibrosisinstitute.org

cfi@wecare4lungs.com

The Cystic Fibrosis Institute is very proud of the various clinical assistance and service programs offered to individuals and families. Need is evaluated on an individual basis and funded based on the resources available. As a not for profit and volunteer staffed organization, The Cystic Fibrosis Institute is able to keep its operating costs low to offer these services in the most cost effective way possible.

"The Cystic Fibrosis Institute (CFI) was founded on the fundamental principle that
every person with cystic
fibrosis (CF) deserves the opportunity to realize his
or her full potential, to
lead as normal a life as
possible and, despite the
many obstacles they and
their families face, share
in the joys of life itself."

Our assistance programs serve the medical, emotional, and social needs of those affected by CF. We assist not only the individual but also their psychosocial adjustment to family members and the world at large. All too often, without the intervention of CFI, many of these needs would go unfilled. Below is a list of some of the assistance programs and services that have been offered by CFI.

Mentorship
CFI has been able to facilitate finding a mentor for individuals with specific needs. Some of these mentors were required to address

- The Newly Diagnosed
- Adolescent Issues
- Dealing with Diabetes
- Fertility Issues/Family Planning
- Insurance Struggles

Medications
CFI has helped bridge the gap with medications used through its network of pharmaceutical companies, direction to assistance programs and other appropriate referrals.

Nutritional Supplements
Through partnering with industry, we have been able to obtain nutritional supplements for patient use who are not otherwise able to afford them.

Clinical Services
CFI can provide contact information for services such as clinical care, genetic counselors, dietary consultation, exercise consultation and social services.

How Are These Programs Funded?
- Through generous donations by individuals and corporations.
- Partnership with Children's Asthma Respiratory & Exercise Specialists and
The Cystic Fibrosis Center of Chicago
- Services are volunteered
- Services offered at subsidized rates

Through its partnership with The Cystic Fibrosis Center of Chicago, CFI has access to the most comprehensive and efficient Cystic Fibrosis Newborn Screening Program for the children of Illinois.

Newborn screening for cystic fibrosis began in Illinois on January 28, 2008. Working with the State of Illinois, The Cystic Fibrosis Center of Chicago has developed a state of the art newborn screening service that offers rapid testing, counseling and initiation of care for infants with a positive newborn screening for cystic fibrosis.

Former Illinois State Rep. David Miller at the
July 14, 2006 Press Conference to Announce
Mandatory Newborn Screening

Newborn sweat test

This premier Cystic Fibrosis Illinois Newborn Screening Service includes:

Hotline
A 24 hour/7 days a week Cystic Fibrosis Newborn Screening Hotline (866-269-1105) to guide pediatricians and families through the Illinois Cystic Fibrosis Newborn Screening Process and answer any questions.

Convenience
Quick access to sweat chloride testing at multiple locations, including St. Alexius Medical Center in Hoffman Estates and Evanston Hospital in Evanston.

Real-time Results
Immediate processing of sweat chloride testing so that families can have results and essential genetic counseling services in a single visit.

Genetic Counseling
While the sweat test is in process, families can meet with a genetic counselor to learn about the screening and testing process.

CF Expertise
Infants who are confirmed to have CF by either genetic analysis or by a positive sweat test are seen immediately by state designated CF specialist and director of The Cystic Fibrosis Center of Chicago, Steven Boas, MD for additional counseling services and initiation of appropriate care.

More About Our 24 Hour CF Newborn Screening Hotline (866-269-1105):
Through an Advocacy Grant which The Cystic Fibrosis Institute has awarded, The Cystic Fibrosis Center of Chicago is proud to offer a 24/7 Cystic Fibrosis Newborn Screening Hotline (866-269-1105). The hotline will provide

- Immediate and around-the-clock access to Certified Illinois Newborn Screening   Program Experts.
- Expert guidance for referring physicians and families in navigating the Illinois   Newborn Screening Program for Cystic Fibrosis.
- A one-stop place for scheduling appropriate testing for babies with positive cystic   fibrosis newborn screening.
- Around the clock access to a state designated CF expert.

What is CF newborn screening?
CF newborn screening tests help to identify babies who might have cystic fibrosis. Most babies with positive newborn screening tests do not have CF. Babies who are found to have CF early can be treated early.

What does my baby’s abnormal CF newborn screen mean?
The Illinois Newborn Screening Program for Cystic Fibrosis is complicated. Contact the 24/7 Newborn Screening Hotline at 866-269-1105 for help in navigating your child’s individual results. In most cases, a positive Illinois Newborn Screening for Cystic Fibrosis means that your baby will need a special test called a sweat test.

Where do I get a sweat test for my baby?
Call the 24/7 Newborn Screening Hotline at 866-269-1105 to set up sweat testing. This testing will be done at a specialized lab with staff members who know how to do testing on young babies and have appropriate genetic counseling services available. Either St. Alexius Medical Center in Hoffman Estates or Evanston Hospital in Evanston can be utilized based on convenience for the family. On the day of the sweat test, you will also meet with a genetic counselor to discuss your baby’s CF newborn screening and answer any questions.

I had a negative CF blood test when I was pregnant. Does my baby still need a sweat test?
Yes. Any baby whose newborn screening result is positive for CF should have a sweat test. Having a negative CF blood test done does not rule out CF.

How is the sweat test done?
The sweat test is simple and should not hurt your baby. If you yourself were to have a sweat test, your skin might feel warm and tingly for about five minutes during the test. Before the test, the technician will apply a chemical that causes sweating to a small area on your baby’s arm or leg. Then, a tiny electrode is attached, and the area is stimulated to cause sweating. Your baby’s sweat is collected in a plastic coil. The collected sweat is sent to the CF lab and tested. It takes about one hour from start to finish.

Do I need to do anything to prepare my baby for the sweat test?
Do not use any lotions or creams on your baby’s arms or legs on the day of the test. Any regular medications may be continued and will have no effect on the test results. Make sure your baby is well fed and hydrated on the day of the test. Furthermore, because hospital rooms may be chilly, bring an extra blanket or sweater and hat to keep your baby warm during the test. Remember – they will need to sweat!

How will I know the results of the sweat test?
The genetic counselor will explain the results of the test on the day of the sweat test and you will have an opportunity to ask questions.

When I have the results of the sweat test, will I know if my baby has CF?
Most of the time the results of your baby’s sweat test will clearly tell you if your baby has CF or not. Sometimes, the sweat test will have to be repeated. Call the 24/7 hotline at 866-269-1105 for help in navigating and interpreting what your child’s test means.

Questions and information
If you have any additional questions about your baby’s newborn screening test, the Illinois Newborn Screen Program, or cystic fibrosis, call our 24/7 hotline at 866-269-1105.

Our Address:
2401 Ravine Way, Suite 302, Glenview, Illinois 60025