#33 Navigating Rare Disease Parenthood and Nonprofit Leadership: Dr. Brent Fields on Hope, Loss, and Building Inclusive Communities

On this episode of Curveball, host Scott Reich sits down with Dr. Brent Fields, CEO of Morgan’s—a groundbreaking nonprofit championing inclusion for the disability community. In an incredibly candid and moving conversation, Brent opens up about his journey as a nonprofit leader and, more intimately, as the father of Chloe, his teenage daughter who lives with an ultra-rare genetic disease. Together, Scott and Brent explore the heartbreaking realities, everyday pivots, and unexpected gifts of parenting a child with severe special needs, touching on universal themes of hope, anticipatory grief, and the power of choice. Their raw, honest dialogue offers wisdom and empathy not just for families touched by rare disease, but for anyone navigating life’s toughest curveballs. Whether you’re seeking solidarity or inspiration to find purpose through adversity, this episode promises meaningful insight and authentic connection.

Listeners Will Learn: 

• Both Scott Reich and Dr. Brent Fields talk about “anticipatory grief” and grieving losses that haven’t yet occurred. 
• Brent refers to the “dichotomy” of hope and pain that defines his family’s journey. 
• They discuss how Chloe's diagnosis changed Brent’s and his wife's career paths and family choices. 
• The episode discusses the high rate of divorce among parents caring for severely disabled children. 
• Brent describes the moment his family visited Morgan’s Wonderland, experiencing true inclusion for the first time. 
• Both Scott and Brent mention how trauma or challenge leads to a “simplification” of life and priorities. 
• Brent talks about the “power of choice” even in the face of overwhelming challenges.
• The episode touches on how well-meaning words from others can sometimes miss the mark. 

Key Moments:

(00:00) A Father's Story: Rare Diagnosis

(05:58) Journey Through Diagnosis Challenges

(09:12) Living Through Uncertainty Together

(10:48) Living Between Grief and Hope

(14:08) Redefining Parenthood Through Grief

(20:47) Choreography of Hope and Access

(22:12) Initially Declining a Job Opportunity

(26:58) Never Bored, Always Grateful

(30:42) Managing Challenges with Simplicity

(34:14) Empathy Gained Through Family Experience

(35:48) Discussing Mortality with Our Son

(38:57) Understanding Others Through Communication

(43:59) Choosing Hope Amid Grief

(45:37) The Power of Small Choices