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The theme of this year’s Feel the Beat is “ELEVATE” – raising awareness and celebrating how research enhances the lives of individuals with HLHS! One area we’ll be raising awareness of and showing our appreciation for is the people who make research possible. One of our guest panels this year will feature patients and families from across the HLHS Consortium who participated in our Phase I stem cell delivery trial, and the Clinical Research Coordinators who have been a part of their journey! Our work wouldn’t be possible without the generosity, motivation, and hard work of these important people.
Make sure to RSVP here if you haven’t already!
The Pieper Family & Somya Shankar -- Children's Hospital of Philadelphia
The Pieper Family lives in central Pennsylvania. Their son Wyatt was diagnosed in utero with HLHS and born at CHOP where he successfully underwent the Norwood procedure. The Piepers returned to CHOP for Wyatt’s Stage II Glenn procedure, where the delivery of Wyatt’s autologous stem cells was performed in December 2018. The Piepers’ relationship with the HLHS Program has evolved over time. Upon diagnosis, the Piepers found resources online to help explain the defect, although they quickly moved on to studying research in scientific journals provided by the HLHS Program. Having the opportunity to participate in the Program’s Phase I autologous stem cell study was a key component of the Pieper family’s decision in where to receive care. Today, Wyatt loves to attend music class and play in pools. Katie and Rob enjoy reading, cooking, playing frisbee, and spending time outside.
Originally hailing from just outside of the nation’s capital, Somya graduated from the College of William & Mary in 2018 with a Bachelor’s degree in Chemistry. Since then, she has been working as a research coordinator at CHOP and will be applying to medical school this year! Her connection to HLHS comes through her work on the Umbilical Cord Blood Collection and Stem Cell Delivery studies. In her spare time, Somya loves to travel, listen to podcasts, and go on long walks with her dog. Somya truly enjoys getting to know the many families who participate in the studies at her site, and looks forward to meeting even more members of the HLHS community here at Feel the Beat 2019.
The Strand Family & Juanita Taylor -- The Children's Hospital at OU Medicine 
The Strand Family lives in central Iowa. Their son Charlie was diagnosed in utero with HLHS, and they learned after birth that he also has Aortic Stenosis and Mitral Atresia. Charlie was born at OU Children’s Hospital in Oklahoma City in July 2017. His cardiothoracic surgeon, Dr. Harold Burkhart, performed the Pulmonary Banding, Norwood, and Glenn open heart surgeries. During his Glenn surgery, Charlie became the eighth infant to receive autologous stem cells on the Phase I Clinical Trial. Charlie turned two this summer and is currently doing very well readying himself for the Fontan surgery. According to his parents, Charlie is ALL boy, has a wonderful, spunky personality, and is definitely a miracle.
Juanita Taylor is a Nurse Navigator for Oklahoma Children’s Heart Center. She has been a nurse navigator for four years and a member of the Heart Center for fifteen years. Juanita lives in Choctaw, OK right outside of Oklahoma City. When she isn’t passionately advocating for families with HLHS and other congenital heart conditions, she dedicates all her spare time to her own family and planning her wedding in October! Juanita has a new granddaughter and is blessed to have a seven-year-old grandson and 4-year-old granddaughter through her fiancé.
The Gutman Family & Karen Miller -- Mayo Clinic 
The Gutman Family lives in northern Ohio. Their son, Luke, was diagnosed in utero with HLHS and treated at Mayo Clinic, and was the second infant to receive the stem cell delivery. Jennifer works as a Service and Support Administrator to help coordinate services for people with developmental disabilities. She joined the organization after it helped Luke reach his milestones through in-home therapy sessions. Learning how to advocate for Luke’s needs led Jennifer to want to advocate for others born differently abled. Jennifer herself is a "rainbow baby” who was born after her older brother with HLHS passed away due to complications from his Norwood surgery. Jennifer’s hobbies include gardening, fishing, boating, and trying to keep up with their two little boys!
Karen has been a coordinator for the HLHS Program at Mayo Clinic since 2014. As a clinical research coordinator, Karen works with families who have a child diagnosed with HLHS and want to participate in the Program’s clinical trials. Some of her responsibilities include study recruitment, ensuring that participants understand and voluntarily consent to participate, and assisting families while they are here for their research visits. Karen lives with her family on her family’s dairy farm outside of Rochester. In her spare time, she loves to go antiquing, spend time in her garden, and travel.
Stay tuned next week for more details on #FTB2019!
Meet other people talking about HLHS or CHD on Mayo Clinic Connect – an online community designed to help patients and families connect with each other. Our community is a safe space to share experiences, ask questions, find answers, and exchange support. The discussion groups and topic pages are moderated to ensure that all posts are respectful, and Mayo Clinic Connect never sells or shares posted information to third parties. Here are some you might like to follow:
- Congenital Heart Disease (topic page)
- Heart & Blood Health (discussion group)
The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. Our specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email us at HLHS@mayo.edu to learn more.
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