432. Instinct Over Fear: A Father's War on Muscular Dystrophy Mazi Keyghobadi

"It takes a village to raise a child. It literally takes almost a country to solve a complex disease like this one."

 

"The will to act is everything. If you want to change a very complex disease with very little resources, you have to keep going."

"It’s not just about fighting; at some point, you have to transition to more of a logic."

"Time is our most valued and precious resource, and for that reason, we’re not able to wait."

In this inspiring episode of Better Call Daddy, hosts Reena Friedman Watts and Wayne Friedman welcome Mazi Keyghobadi, a dedicated father and advocate battling muscular dystrophy. Mazi's journey is akin to flying through turbulence, filled with grit, heart, and the unwavering love for his son. He draws a powerful parallel between his experiences and the iconic film Top Gun, emphasizing the importance of courage and teamwork in the face of adversity.

Mazi shares the emotional moment he discovered his son's diagnosis and the subsequent journey of becoming an expert in muscular dystrophy. He discusses the complexities of the disease, the challenges of navigating medical conversations, and the critical role of collaboration within the muscular dystrophy community.

With a focus on action and determination, he highlights the necessity of building a support network, working with scientists, and advocating for research that could lead to breakthroughs for rare mutations. Listeners will be captivated by Mazi's insights on resilience, the importance of awareness, and the drive to make a difference, not just for his son but for others facing similar challenges.

His story is a testament to the power of community, the significance of open communication, and the relentless pursuit of hope in the fight against muscular dystrophy.

Join us for a heartfelt conversation that underscores the essence of fatherhood, the quest for knowledge, and the transformative power of love. This episode is a must-listen for anyone seeking inspiration and motivation in the face of life's toughest battles.

(00:00) Reena Friedman Watts interviews Mazi Keyghobadi about battling muscular dystrophy (05:16) Talk about when you first found out that your son had muscular dystrophy (10:36) The key here is collaboration. It literally takes almost a country to solve a (16:34) Getting the scientists was not that challenging, but it required a little bit of bravery (18:26) What would you tell other parents that find out that their child has muscular dystrophy (23:16) So talk to me about how you've taken action and gotten attention for the action (30:02) Have you talked to your son about muscular dystrophy? Yes (35:21) Talk to me about consciousness and staying humble (38:49) We plan to share data and research live as we go (44:52) What is the probability of a cure if you do this study on mice (52:49) That really is. Wow. What big blessing that is. And again we were introduced to that. And they gave it to us without asking for (53:21) We currently need $4 million for a clinical trial (01:00:30) PPMD's Advocacy Conference is scheduled for June in Las Vegas (01:04:23) Tushar Tangsali is raising funds for muscular dystrophy research (01:08:18) The Better Call Daddy Show focuses on helping people with rare diseases

Don't miss this enlightening episode that reminds us all of the strength found in community and the impact of relentless advocacy. Be sure to like, subscribe, and share this episode with anyone who needs a dose of inspiration!

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