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368. A Father's Fighting Chance Against Duchenne Muscular Dystrophy: Mazi Keyghobadi

368. A Father's Fighting Chance Against Duchenne Muscular Dystrophy: Mazi Keyghobadi

FromBetter Call Daddy


368. A Father's Fighting Chance Against Duchenne Muscular Dystrophy: Mazi Keyghobadi

FromBetter Call Daddy

ratings:
Length:
88 minutes
Released:
May 1, 2024
Format:
Podcast episode

Description

What's life?  What kind of world are we leaving for our children?  Mazi Keyghobadi shares his battle against muscular dystrophy for his son's future.  He believes you need to speak your mind and contribute!  He is leading by example.
There's only one other person that has the rare form of muscular dystrophy that Mazi Keyghobadi's son has.  It wakes up part of you you never knew existed.  In this heart-stirring episode of Better Call Daddy, we meet Mazi Keyghobadi, a father whose love knows no bounds. Mazi is the co-founder of Hope for Luca, a nonprofit organization named after his seven-year-old son, who battles a rare form of muscular dystrophy. With the tenacity of a warrior and the heart of a lion, Mazi shares his family's journey through the trials and tribulations of seeking a chance for Luca to live a normal life.
 
Mazi's story is one of sacrifice, determination, and the relentless pursuit of hope. From selling his car to pouring his life savings into research, he embodies the spirit of a parent who will stop at nothing to give his child a fighting chance. His quest leads him to the forefront of scientific research, where he collaborates with leading experts and navigates the complex world of fundraising and advocacy.
 
But this episode is more than just a tale of a father's love. It's a call to action for anyone with a dream, a reminder that sometimes the most significant victories come from the heart. Mazi's message is clear: see the strength in those who fight battles unseen, hear their voices, and appreciate the heroes who live among us.
 
Join Reena Friedman Watts as she delves into the depths of a father's soul, exploring the power of unwavering faith and the beauty of a bond that defies all odds. Better Call Daddy: The Safe Space for Controversy.
 
Connect with Mazi and support his mission at hopeforluca.org, and be part of the movement that champions the extraordinary lives of children like Luca.
 
Go Fund Me page
https://www.gofundme.com/f/raising-130k-to-fund-preclinical-research-study
 
Mazi on Linkedin
https://www.linkedin.com/in/mazi-keyghobadi-55a92493/
 
PPMD (Parent Project Muscular Dystrophy)
https://www.parentprojectmd.org
TREAT-NMD is a global network of experts in the neuromuscular field
https://www.treat-nmd.org/
 
Better Call Daddy: The Safe Space for Controversy.
 
Connect with Reena:
https://bettercalldaddy.com
https://linkedin.com/in/reenafriedmanwatts
https://twitter.com/reenareena
https://instagram.com/reenafriedmanwatts
https://instagram.com/bettercalldaddypodcast
 
We'd love to hear from you. Drop us a review—reviews help more people find the show—and let us know what you like and what you'd like us to explore next.
 
Share this episode with someone who could be inspired by Mazi's story and help spread the hope for Luca and many others facing similar challenges.
 
Show notes created by https://headliner.app
 
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? Episode Chapters
 
(00:00) Mazi Keyghobadi's son has a rare form of muscular dystrophy
(00:35) You sent me a video of Top Gun with Duchenne disease
(04:00) I actually had such a different interpretation that is really interesting, actually
(05:45) Your son was diagnosed with muscular dystrophy at 14 months old
(11:22) For kids with muscular dystrophy, those satellite cells get over produced
(16:38) Lily Brasch has a rare form of muscular dystrophy
(21:40) Go get somebody with muscular dystrophy and ask them questions about life
(21:52) Do you feel like God made your son this way? I feel universe
(27:42) When he was nine months old, I started telling him about Santa
(31:11) Lukian has a deletion and could potentially have a shorter life
(35:27) You formed a nonprofit to study the effects of deletion on muscular dystrophy
(40:52) Mazi met with researcher who is major figure in muscular dystrophy research
(45:55) A lot of self digging is required, because you do go down
(49:29) Nothing has been accomplished. Nothing has been done, you know?
(54:28) Every dollar that she's allocatin
Released:
May 1, 2024
Format:
Podcast episode

Titles in the series (100)

Reena loves a story, and she‘s fascinated by the people behind them. In fact, she loves to bring stories to life. Her appetite for storytelling has taken her from the Jerry Springer Show to the legal drama of the courtroom. From influential players to reality stars, nothing is censored here. Reena interviews people whose stories haven‘t been told, at least not through her unique lens, and then gets daddy‘s advice afterward. Whether you have daddy issues or a father who‘s inspired your path, you will be able to tap into my daddy‘s wisdom, wit, and humor at the end of every episode. My daddy has been a guiding light my whole life and there‘s not much he doesn‘t know, as an entrepreneur for forty-plus years, a husband, a loyal son, and my number one supporter. He has learned lots of life lessons along the way and is here to share them with you. It‘s time to reminisce and reflect on the conversations you‘d like to have with your daddy and learn from mine. Come share in some good old fashioned family bonding. There is wisdom from four generations and I’m addressing what happens from childhood to adulthood!