Sips for CF

Sips for CF is one week away and we are so excited for another great event.  Kick the week off with us starting Wednesday August 17, 2016 from 5-9 p.m. at Kendra Scott at the Summit.  Come enjoy some bites and bubbles as well as shop the hottest new styles.  A portion of the proceeds that night will come directly to Laps for CF!

After you find your perfect jewelry pieces, come downtown Friday night to the Alabama Theatre.  We will have entertainment from 7th Ave. South, wine tasting, as well as food and drinks, and a silent auction.  Tickets are available online beforehand as well as at the door.

As always, all proceeds from the event go to support the Cystic Fibrosis centers at Children's of Alabama and UAB.  We hope to see you there!

2016 Annual Report

Laps for Cystic Fibrosis Update

                         As of May 2016

Emily Schreiber - Laps for CF

When I was nine and started fundraising we had a simple goal: to help Children’s reach their goals by funding various needs throughout the Clinic.  Over the last fourteen years, our relationship has only deepened.  I am amazed by the phenomenal accomplishments of the Cystic Fibrosis team at Children’s, and it excites me both as a participant and a patient. 

I have had the unique experience of experiencing Children’s as both a patient and as an outsider.  I’ve lived through good and bad news at Clinic appointments.  I’ve been annoyed while waiting for Dr. Gutierrez to go on rounds while an inpatient, and have gotten to know him outside of Children’s and be inspired by his incredible work in Chile and tireless work for Cystic Fibrosis patients.  This experience has only reinforced the belief that while Children’s has done so much, there’s always more we can do to aid patients. 

Laps for Cystic Fibrosis has not strayed from our vision of working to continue enabling Children’s to be the best Cystic Fibrosis Clinic is can be.  Our goals have changed only as we’ve “checked off” things we wanted to accomplish.  Children’s has gone from ranking in the lowest 15% of performing Cystic Fibrosis Clinics to one of the top in the nation, in a relatively short period of time.  However, despite this amazing accomplishment there

is still work to be done.  Patients and their families continue struggling with this chronic illness physically, financially, and emotionally. 

Our new initiative Breathe Better Birmingham is focused on getting a flutter valve in every patient’s hands. A flutter valve enables patients to do lung treatment without a less cumbersome medical device.  The result of this is more freedom for patients and another option from the burdensome routine of daily lung treatments.  We’re so excited about this project! I cannot wait to see what the next fourteen years have in store!

Emily Schreiber

CF Patient and Founder, Laps for CF

Laps for CF’s Donations to Children’s of Alabama

 

An infant pulmonary function machine, which measures how well an infant’s lungs are working. Only the largest Cystic Fibrosis centers have this equipment.

 

A Portable pulmonary function machine, which measures how well lungs are working. Its portability helps decrease the risk of infection that is increased when the patient needs to go to the pulmonary function lab.

 

A ScaleTronix Pediatric Scale measures the weight of infants.

Dream a Little Dream Chile

Earlier this year, the pulmonary team from Children's and UAB went back to Santiago, Chileto work on Dream A Little Dream (DALD.). This project has been growing over the last few years and continues to do so as a result of the positive outcomes for the patients there.  While the team was there they were able to accomplish several things.  One big goal every time is to review patients' cases.  Most of these patients are ones that may be presenting unusual symptoms and figure out the best course of action for the patient.  They also use the knowledge that has helped the local center here in Alabama become so successful and put it to use at the center in Chile.  Since the team at Children's has grown, there experiences with CF patients has been vast and can lend experience to some teams who have had limited interaction with CF patients.  There is still much to be done, but in just the short time that DALD has been in place there have been remarkable improvements for several patients.  The project has also brought many different centers together to work towards one goal of helping patients stay healthy and live longer.  Growing interest from hospitals around Chile is also helping lend validity and support for the project.  Laps for CF is dedicated to helping improve the lives of Chilean CF patients by supporting DALD.

A note from Emily

It is insane that we have been fundraising for fourteen years now.  As the needs if the Cystic Fibrosis community has evolved, Laps for Cystic Fibrosis has been able to change alongside them.  Though our mission of helping patients and their families deal with this illness has remained the same, our vision has been allowed to shift as needs in Birmingham have evolved.  When we began fundraising, the Children’s of Alabama CF clinic was among the lowest performing in the nation.  Today, it boasts one of the highest, most consistent patient outcomes.  Similarly, the adult CF clinic in Birmingham at UAB has seen the same improvements.  The role that Laps for Cystic Fibrosis played in this was nothing compared to the work of doctors, nurse practitioners, nutritionists, physical therapists, and others but did contribute to the results we’re now seeing.

            We are excited about our next project which will work to connect Cystic Fibrosis communities throughout the Southeast in order to capitalize on what has worked so well to improve our Birmingham clinic.  We want to do a better job updating our generous supporters on what is new at Laps for Cystic Fibrosis and the exciting year ahead.

           

Emily Schreiber is the Founder and a current Board Member of Laps for Cystic Fibrosis.  She is currently a 1L at Cumberland School of Law in Birmingham AL.