Support. Educate. Empower.
Heterotaxy Connection is a registered 501(c)3 non-profit dedicated to supporting, educating, and empowering families affected by Heterotaxy Syndrome.
Meet the Board
Board Members – 2017
Necia Munro --President
Necia is a busy wife and mom to 3 special needs kids, although her Heterotaxy hero is definitely the most demanding. She lives in Utah and enjoys reading, crafting, and puzzles. Since the birth of her daughter that has Heterotaxy in 2005, she spends much of her time researching and networking to get the best care possible. She has a strong desire to help families know they are not alone on their Heterotaxy journey. Her Heterotaxy Hero is Hallie. She is 11 years old, and while very complex, is constantly proving that she will do things in her own unique way, in her own time frame.
Heather Williams –Vice President
An Army veteran, wife and mom to 4, Heather never finds herself bored. When she’s not keeping up with her busy household, she’s crafting, reading or gardening. Since her youngest was born with heterotaxy in 2011, she has developed a passion for guiding families to insist for the best care fit for their family and proactive treatment. Her heterotaxy hero is Alexander, 5 and thriving.
Courtney is a busy mother to 3 children, her oldest daughter was born with Heterotaxy in 2001. Her passion in life is supporting others affected by Heterotaxy Syndrome. She spends her time managing the complex care of her daughter and volunteering at the local children's hospital in addition to spreading awareness of this complex condition to families and professionals.
Tania lives in Southern California and works as an Administrative Assistant. She has been happily married to her husband Randy for 19 years. They have 4 children: Joey, Bekah, Jonathan and Rachel, their heterotaxy hero, who passed away at only 1 month old in February of 2015. Prior to Rachel's diagnosis, Tania had never heard of heterotaxy. Promoting awareness of heterotaxy and increasing support and education for the community it affects has now become one of her life's purposes.
Ali is a former PICU nurse who spent nearly six years volunteering on board a hospital ship off the coast of West Africa before her son Ethan's heterotaxy diagnosis unexpectedly brought her family (husband Phil and daughter Zoe) back to life on land in 2014. Since giving up her sea legs, Ali has been enjoying the perks of a stationary life; fresh milk and strawberries are high on the list, along with the high-speed internet that allows her to pursue her new passion: coming alongside families across the country and around the world as they walk the hard road of heterotaxy, making sure that no one has to face the journey alone.