AAKP's Pediatric Kidney Pals - June 2019
Teenage Brother & Sister Receive Kidney Transplants Together

John Ben (18) and Ava (14) are the teenage children of John and Kim Shepperd who live in Texas. John Ben and Ava both were born with Cystinosis, a rare genetic disease that effects many parts of the body including the kidneys.

The Shepperds worked hard to keep their children off dialysis for many years by taking all the necessary medications, modifying the kid's diets and seeing their kidney doctor regularly. They knew the kids would eventually need a kidney transplant but hoped it would not be until their late teens or early twenties.
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In This Issue
Best Hospitals for Pediatric Nephrology

Fifty children's nephrology hospital centers were ranked for care of serious kidney disorders in children. Survival following kidney transplant, biopsy complications, management of dialysis, and overall infection prevention, along with other data such as commitment to best practices and use of advanced techniques and technologies collected from a detailed U.S. News clinical survey of children's hospitals, produced 85 percent of each hospital's score. The other 15 percent reflects expert opinion of specialists and subspecialists in pediatric nephrology who responded to surveys in 2017, 2018 and 2019 and recommended the hospital for serious cases in nephrology.

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PATIENT SPOTLIGHT:  Our Top Pick of Inspiring Stories about Young Patients
Young Kidney Transplant Recipient, Gabriella Nelson, (pictured right) attended Renal Physicians Association (RPA) Capitol Hill Day with AAKP Ambassadors this month with her mother.

If you were on Capitol Hill last week with AAKP for the RPA Capitol Hill Day, you would have seen the adorable Gabriella Nelson walking around munching on snacks and occasionally saying "A-men" after a long meeting.  Gabriella attended the RPA Hill Day with her mother, Angela Clayton and her God-mother, Leslie Jones, to advocate for pediatric patients.  Some of the concerns that were brought to the attention of elected officials included Immunosuppressive Drug Coverage and the Living Organ Donation Protection Act.
Do you have an inspiring pediatric kidney patient in your life?  Share their story with AAKP by emailing  dpelaez@aakp.org .  Learn more about advocating with AAKP in our Action Center .
PREVENTION SPOTLIGHT: Premature birth may significantly increase risk for CKD later in life
A recent study found that preterm and early birth were strong risk factors for the development of chronic kidney disease from childhood to mid-adulthood, and those born prematurely should receive long term follow-up to preserve renal function over their lifetime.

"Preterm birth (< 37 gestational weeks) interrupts the development and maturation of the kidneys during a critical growth period," Casey Crump, MD, PhD, professor in the departments of family medicine and community medicine at the Icahn School of Medicine at Mount Sinai, and colleagues wrote. "The third trimester of pregnancy is the most active period of fetal nephrogenesis, during which more than 60% of nephrons are formed. Interruption of this process results in a lower nephron endowment that is lifelong."

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