parents of infants and children with kernicterus power of partnership presentation at 2012 medicine...
TRANSCRIPT
![Page 1: Parents of Infants and Children with Kernicterus Power of Partnership presentation at 2012 Medicine X, Stanford University, Palo Alto, CA](https://reader033.vdocuments.us/reader033/viewer/2022051414/55a5b6c91a28ab21578b4630/html5/thumbnails/1.jpg)
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
![Page 2: Parents of Infants and Children with Kernicterus Power of Partnership presentation at 2012 Medicine X, Stanford University, Palo Alto, CA](https://reader033.vdocuments.us/reader033/viewer/2022051414/55a5b6c91a28ab21578b4630/html5/thumbnails/2.jpg)
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
![Page 3: Parents of Infants and Children with Kernicterus Power of Partnership presentation at 2012 Medicine X, Stanford University, Palo Alto, CA](https://reader033.vdocuments.us/reader033/viewer/2022051414/55a5b6c91a28ab21578b4630/html5/thumbnails/3.jpg)
PICK BEGINNINGS
• 6 moms meet in Fall 2000
• Recruited well-known, nationally recognized researchers and safety experts to be PICK advisors
![Page 4: Parents of Infants and Children with Kernicterus Power of Partnership presentation at 2012 Medicine X, Stanford University, Palo Alto, CA](https://reader033.vdocuments.us/reader033/viewer/2022051414/55a5b6c91a28ab21578b4630/html5/thumbnails/4.jpg)
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
![Page 5: Parents of Infants and Children with Kernicterus Power of Partnership presentation at 2012 Medicine X, Stanford University, Palo Alto, CA](https://reader033.vdocuments.us/reader033/viewer/2022051414/55a5b6c91a28ab21578b4630/html5/thumbnails/5.jpg)
OUTCOMES
![Page 6: Parents of Infants and Children with Kernicterus Power of Partnership presentation at 2012 Medicine X, Stanford University, Palo Alto, CA](https://reader033.vdocuments.us/reader033/viewer/2022051414/55a5b6c91a28ab21578b4630/html5/thumbnails/6.jpg)
PICK PARTNERSHIPS IN ACTION MATERNAL AND CHILD HEALTH BUREAU
HOSPITAL CORPORATION OF AMERICA
![Page 7: Parents of Infants and Children with Kernicterus Power of Partnership presentation at 2012 Medicine X, Stanford University, Palo Alto, CA](https://reader033.vdocuments.us/reader033/viewer/2022051414/55a5b6c91a28ab21578b4630/html5/thumbnails/7.jpg)
PARTNERSHIP IN ACTION INTERNATIONAL OUTREACH
![Page 8: Parents of Infants and Children with Kernicterus Power of Partnership presentation at 2012 Medicine X, Stanford University, Palo Alto, CA](https://reader033.vdocuments.us/reader033/viewer/2022051414/55a5b6c91a28ab21578b4630/html5/thumbnails/8.jpg)
PARENT EDUCATION CAMPAIGN
![Page 9: Parents of Infants and Children with Kernicterus Power of Partnership presentation at 2012 Medicine X, Stanford University, Palo Alto, CA](https://reader033.vdocuments.us/reader033/viewer/2022051414/55a5b6c91a28ab21578b4630/html5/thumbnails/9.jpg)
PREVENT THIS
![Page 10: Parents of Infants and Children with Kernicterus Power of Partnership presentation at 2012 Medicine X, Stanford University, Palo Alto, CA](https://reader033.vdocuments.us/reader033/viewer/2022051414/55a5b6c91a28ab21578b4630/html5/thumbnails/10.jpg)
COMMUNICATIONS MEDIA
![Page 11: Parents of Infants and Children with Kernicterus Power of Partnership presentation at 2012 Medicine X, Stanford University, Palo Alto, CA](https://reader033.vdocuments.us/reader033/viewer/2022051414/55a5b6c91a28ab21578b4630/html5/thumbnails/11.jpg)
COMMUNICATIONS WEBSITE AND SOCIAL MEDIA
![Page 12: Parents of Infants and Children with Kernicterus Power of Partnership presentation at 2012 Medicine X, Stanford University, Palo Alto, CA](https://reader033.vdocuments.us/reader033/viewer/2022051414/55a5b6c91a28ab21578b4630/html5/thumbnails/12.jpg)
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
![Page 13: Parents of Infants and Children with Kernicterus Power of Partnership presentation at 2012 Medicine X, Stanford University, Palo Alto, CA](https://reader033.vdocuments.us/reader033/viewer/2022051414/55a5b6c91a28ab21578b4630/html5/thumbnails/13.jpg)
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
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THINK OF ALL THE POSSIBILITIES WHEN WE ALL WORK TOGETHER!
JUSTIN SMITH
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THANK YOU
Kris Schulze
Parents of Infants and Children
with Kernicterus (PICK)
www.pickonline.org