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March 28, 2025 90 mins

What happens when life doesn’t go according to plan? How do you keep hope alive when faced with unimaginable challenges?

 

In this episode, Justin Weidenfeld welcomes Kevin and Jeff Romer, a father and son who openly share their family’s journey after receiving Mathew’s devastating Tay-Sachs disease diagnosis. Kevin recalls the overwhelming early days—the emotional and financial pressures, the uncertainty about the future—and sheds light on the crucial role genetic testing plays in family planning.

 

Jeff reflects on what it meant growing up as Mathew’s brother, revealing the complex mix of isolation, guilt, and determination that shaped his childhood. Together, Kevin and Jeff explain how founding the Mathew Forbes Romer Foundation became a meaningful response to their grief and a way to help other families facing similar situations.

 

Their story highlights the power of preparation and awareness: Why is genetic testing essential for every family, regardless of background? How can community support transform your experience of grief?

 

Join this meaningful discussion to find out how the Romers turned tragedy into lasting impact, inspiring compassion, understanding, and hope along the way.

 

Episode Breakdown:

00:00 Introduction 

06:08 Discovering Tay-Sachs Disease

10:12 Balancing Care and Family Life

13:00 Jeff’s Perspective: Growing Up with Mathew

17:04 Life After Mathew’s Passing

19:06 Kevin Reflects on Mathew’s Life

25:08 Support Systems and Community

30:01 The Role of Employers in Supporting Grieving Employees

34:04 The Importance of Bereavement Services

35:00 Kevin’s Grief Process After Mathew's Death

38:20 Jeff’s Grief Journey and Coping Mechanisms

41:03 Financial Challenges and Medical Expenses

51:32 Honoring Mathew’s Legacy: The Foundation

 

Links

Connect with Kevin Romer & Jeff Romer:

https://mfrfoundation.org/  

https://www.instagram.com/brainwave.chess/ 

https://www.linkedin.com/in/jeffrey-romer/ 

https://www.linkedin.com/in/kevin-romer/

 

Connect with Justin Weidenfeld:

LinkedIn: https://www.linkedin.com/in/justin-weidenfeld/

Website: https://www.ironbridgewc.com/team/justin-weidenfeld

Instagram: https://www.instagram.com/thecurrencyofgrief_podcast 

Podcast production and show notes provided by HiveCast.fm

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