Board of Directors
Made up of women from across the USA, our board is a team united in their love for their children with heterotaxy and their desire to see every family receive the support they need while they walk the hard road of heterotaxy.
President & Co-Founder
Director of Medical Research Collaboration
Director of Patient Support Programs, Secretary
Meet Necia Sabin, a compassionate advocate, and the driving force behind this empowering support group. Necia first encountered the term “heterotaxy” when her daughter was six years old. Confronted with numerous surgeries and medical procedures, Necia navigated through these dark and challenging years, seeking connection and support. It was during these difficult years that she crossed paths with another heterotaxy mom, laying the foundation for what would become Heterotaxy Connection. Driven by a profound desire to spare others from the struggles that she experienced, Necia assumed a pivotal role in founding Heterotaxy Connection. She strives to provide immeasurable support for families with Heterotaxy. The heartfelt thanks from those who find comfort, belonging, and support in this community make the effort worthwhile. While Necia acknowledges that her personal journey has not been easy, she strives to make others’ journeys easier who face similar challenges.
Alison has been a pediatric RN for nearly two decades and has experience with heterotaxy from both sides of the bed, first from caring for patients in the PICU and later as the mother of a child with heterotaxy and complex congenital heart defects. Working overseas on board a charity hospital ship in West Africa gave her a deeper understanding of the needs of the underserved, and she translated this knowledge into a passion for healthcare advocacy in the US when her son's diagnosis necessitated a move to land. In addition to her role at Heterotaxy Connection, Alison currently works as a pediatric home health nurse, a need whose importance she came to understand on a personal level after getting involved in the heterotaxy world and the wider disability community.
Eight months into her second pregnancy, Abby's life changed forever when she learned that something was seriously wrong with her unborn baby girl. Soon after, she gave birth to her precious daughter, Alaina, who unexpectedly died exactly 7 months after she was born. Transitioning from the mother of a chronically ill child to a bereaved mother has been life altering, and working with Heterotaxy Connection has opened a new door to continue channeling productive energy into the fight against Heterotaxy. Abby oversees finances and is a liaison between our board and the medical community. She is committed to collaborating with physicians and researchers who are working on improving standards of care for heterotaxy patients. By day, Abby works as a clinical psychologist and university professor in northwest Ohio. When she's not working, she's busy spending time with her 4 living children and husband.
Monica is a dedicated music teacher and military spouse, well-acquainted with navigating significant life transitions. Amidst the challenges of residing thousands of miles away from home, she faced the unexpected rare diagnosis of heterotaxy for her unborn daughter. When conventional medical resources fell short, providing only a scant two-page printout and a disconcerting prognosis, Monica sought solace and guidance from the newly-formed Heterotaxy Connection. This organization swiftly became her beacon of hope and a wellspring of information as she and her husband assumed the roles of primary caregivers to their medically complex infant. Drawing on her background as an educator, Monica's teaching expertise proved invaluable during the critical early years of her daughter's life. She adeptly developed routines and comprehensive care plans while deftly navigating the challenges of frequent relocations due to military commitments. As her involvement with the Heterotaxy Connection deepened, Monica selflessly volunteered her time to awareness and fundraising initiatives. Monica's commitment to her daughter extended beyond medical caregiving, as she undertook the responsibility of homeschooling for five years until her daughter's health stabilized sufficiently for her to attend traditional school, where she now thrives. Presently, Monica finds fulfillment in homeschooling her preschool-aged son and cultivating her entrepreneurial venture, Inspired By Lauren, a business named in honor of her daughter. Her creative pursuits encompass crafting children's clothing, engaging in various arts and crafts, tending to her garden, and immersing herself in the wonders of nature.
Over seven years ago, experiencing the discovery of her son's heterotaxy during pregnancy was a daunting and lonely journey. Faced with the rarity of the condition and a lack of medical knowledge, she had difficulties manuvering a challenging path to find answers. Upon his birth, advocating for him became a crucial skill as she sought to ensure he received the best possible care. With many surgeries and hosptial stays in his future, it was essential to find support. Discovering Heterotaxy Connection proved to be a game-changer, making her journey more manageable. With support, she gained valuable insights, enabling her to pose the right questions and receive incredible advice. This guidance not only aids her in advocating for her son's medical care but has also become invaluable in her everyday life. Karli, our Community Engagement Director, is dedicated to welcoming and connecting with new families. Her goal is to ease their journeys by offering hope and valuable resources, mirroring the support she once received from Heterotaxy Connection. With a passion for extending the same transformative connection, Karli strives to empower families navigating similar paths.