W O R K I N G T O G E T H E R T O P R E V E N T

A N D T R E A T K E R N I C T E R U S

POWER OF PARTNERSHIP

A $1 BILIRUBIN TEST COULD HAVE PREVENTED BRAIN DAMAGE

• Justin has severe cerebral palsy

• Unable to sit on his own, feed himself or get a drink

• Has auditory neuropathy, visual tracking difficulties,

strabismus, enamel hypoplasia

• Not able to speak intelligibly

PICK BEGINNINGS

• 6 moms meet in Fall 2000

• Recruited well-known, nationally recognized researchers and safety experts to be PICK advisors

SYSTEM-WIDE CONSUMER HEALTHCARE WORKSHOP

• February 2001 Participants

• Joint Commission on Accreditation of

Healthcare Organizations (JCAHO)

• Centers for Disease Control and Prevention

• National Center on Birth Defects and

Developmental Disabilities (CDC/NCBDDD)

• National Institutes of Health (NIH)

• American Academy of Pediatrics (AAP)

• Boston Children’s Hospital, Harvard School of

Public Health

• Maternal Child Health Bureau

• National recognized researchers

OUTCOMES

PICK PARTNERSHIPS IN ACTION MATERNAL AND CHILD HEALTH BUREAU

HOSPITAL CORPORATION OF AMERICA

PARTNERSHIP IN ACTION INTERNATIONAL OUTREACH

PARENT EDUCATION CAMPAIGN

PREVENT THIS

COMMUNICATIONS MEDIA

COMMUNICATIONS WEBSITE AND SOCIAL MEDIA

WHAT WAS ACCOMPLISHED?

• Model for a family-centered, systems-

based approach for constructive parent

and healthcare partnerships to address

preventable newborn disabilities

• Non-profit organization governed primarily by patients or family members

• Created expert advisory panel with same

passion and courage

• Identify and contact partners or partner organizations

• Have changed the landscape for how

newborn jaundice is treated

AND MORE TO COME

• Connecting families from around the world

• Planning 2013 Family Gathering and 2014 Family

and Research Conference

• Focus on Family Support and Research for effective

treatments for individuals with KI

THINK OF ALL THE POSSIBILITIES WHEN WE ALL WORK TOGETHER!

JUSTIN SMITH

THANK YOU

Kris Schulze

Parents of Infants and Children

with Kernicterus (PICK)

Kris.schulze@pickonline.org

www.pickonline.org