Contributors

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Host

Jillian Arnold

Jillian Arnold is partner to her husband, Donald, and a mother to her two incredible children, Roman and Stella, who both suffer from an ultra rare and life limiting genetic disorder, ASMD (Acid Sphingomyelinase Deficiency or otherwise known as Niemann Pick Disease Type A/B). There is no known cure, but there are some promising treatments in the works. 


Jillian wanted to start this podcast with the intention of sharing their journey with the world, share her truest, rawest, thoughts and feelings as she navigates life raising not just one, but two children living with a life-limiting genetic disease, and be able to connect with other parents who are also on an atypical path with their children. She knows how receiving a diagnosis like this can be completely and utterly devastating, but wants parents like her to realize that when you pull yourself out of the darkness and shock, there is so much light and beauty to be seen and experienced.


Guests

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Guest

Abby Zachritz

Abby Zachritz, also known as Advocacy Abby, is a mother of five, advocate, and guiding voice for families navigating disability and complex medical challenges. As Co-Founder of the Connect Platform, Abby empowers families by linking them to thousands of grants, therapy options, and financial resources worldwide. She now serves as the Director of Advocacy for Families with SupportNow and is on the board for the Parent Empowerment Network, furthering her mission to provide tools, guidance, and hope to families. Abby also consults corporations on better serving clients with unique needs and inspires audiences as a speaker, sharing her message of resilience and the power of connection.

https://www.advocacyabby.com/
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Guest

Ashley Haywood

Ashley Haywood is a devoted mother to Sadie Rae, a spirited child diagnosed with Sanfilippo syndrome, a rare and progressive neurodegenerative condition. As a fierce advocate, Ashley dedicates her time to raising awareness about Sanfilippo syndrome, supporting research efforts, and fostering a sense of community for families navigating similar journeys. With resilience and love at the heart of her mission, Ashley works tirelessly to create a brighter future for Sadie Rae and others living with rare diseases.

https://www.savingsadierae.org/
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Guest

Hilarie Geurink, RD, CSP

 Hilarie Geurink, RD, CSP is a Registered Dietitian and Certified Specialist in Pediatrics with over nine years of experience helping families navigate tube feeding. She is the founder of Blended Tube Feeding, a virtual practice dedicated to supporting families as they incorporate real food into their tube feeding routines. Their focus is on improving digestion and health outcomes, creating a sense of normalcy, and empowering parents to feel confident and in control of their child’s nutrition.

https://www.instagram.com/blendedtubefeeding/
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Lauren Williams

Lauren and Casey Williams were devastated when their seven year old son, Carter, passed away from a rare neurodevelopmental disorder called GRIN1. Lauren worked tirelessly to find support and treatments for her son, but their fight to save him ended when he passed away on September 28, 2023. GRIN1 disorder, part of a larger group of GRI disorders, causes severe seizures, developmental and speech delays, and muscle weakness. Like Carter, many children with the condition struggle with walking, talking, eating, and performing basic daily activities. Currently, no treatments are available, and care is limited to physical therapy, nutritional support, and medications to help manage symptoms.

Despite her unimaginable loss, Lauren remains dedicated to helping other families impacted by GRI disorders. After Carter’s diagnosis in 2017, she and four other families co-founded CureGRIN, a nonprofit that raised more than $2.3 million to support families and advance research efforts.

https://curegrin.org/
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Guest

Mary Ann Hughes

Certified Special Needs Divorce Coach