Raising Rare

By Raising Rare

Imagine the excitement of becoming a new parent and then within hours finding out your child has a serious developmental disorder. That is exactly where Sanath Kumar Ramesh found himself in the summer of 2018. One year later, on his son’s first birthday, they found out that their son, Raghav, had an extremely rare mutation of the GPX4 gene. At the time, doctors told them that Raghav may be the only one on the planet with this genetic variant who had lived beyond one month of life. The prognosis is completely unknown. They were alone. They were scared. And then they went into action. And now they want to share their story. Every couple of weeks Raising Rare will give you an update on baby Raghav as he grows up. We will also share how Sanath and his wife Ramya are driving toward a treatment for their son. We will explore the science that Sanath is initiating, their efforts to fund that research, and the people they meet along the way. We will also hear how the family adjusts to challenges and changes that they are faced with. Most importantly, we will share the wisdom they gain along the way so that other Rare Parents can learn from their steps and missteps. We don’t know where this story will go. We do know we want you to join us for the journey.

  1. 1.
    Introducing Raising Rare
    5:04
  2. 2.
    Connecting the Dots of Life
    35:22
  3. 3.
    We Are Not Alone on This Climb
    22:26
  4. 4.
    Meet Raghav's Mom
    30:30
  5. 5.
    Hope. Action. Strength. Hope.
    23:50
  6. 6.
    Finding Help in the Land of (Intellectual) Giants
    22:28
  7. 7.
    SPECIAL: IMPACT OF COVID-19 ON THE QUEST FOR A CURE FOR BABY RAGHAV
    7:08
  8. 8.
    The First GPX4 Conference Ever (Part 1)
    21:30
  1. 9.
    Managing the Day With a Child With a Rare Disease
    27:42
  2. 10.
    We Need Decisions that Lead to Therapies for GPX4
    32:18
  3. 11.
    It's just not humanly possible
    11:38
  4. 12.
    Difficult Decisions
    11:33
  5. 13.
    Learning His Language
    19:52
  6. 14.
    Deep Gratitude
    26:56
  7. 15.
    No Search Results. A Fellow Traveler’s Relentless Pursuit of a Cure (Part 1)
    20:36
  8. 16.
    Leaders in the Club Nobody Wanted to Join (Part 2)
    14:17
  9. 17.
    When Unrelenting Stress Meets The Relentless Parent (Part 3)
    25:48
  10. 18.
    Anticipation: Experimental Drug Offers Hope
    36:11
  11. 19.
    Rare Together Watch Together: A Night Of Tears, Smiles, And Reflection
    23:33
  12. 20.
    Dr. Ethan Perlstein Discusses Drug Repurposing for Rare Diseases
    35:46
  13. 21.
    Terry Pirovolakis: A Fellow Dad Fighting for His Son (Part 1)
    22:25
  14. 22.
    Terry Pirovolakis: A Fellow Dad Raising Funds for His Son (Part 2)
    27:29
  15. 23.
    Rare Mamas Part 1: Nikki McIntosh and Ramya On Choosing Hope
    15:17
  16. 24.
    Rare Mamas Part 2: Nikki McIntosh Moving from Distress to Prowess
    22:40
  17. 25.
    Effie Parks, The power of laughter, podcasts, and passive friendships
    27:41
  18. 26.
    Parents Lifting Heavy Cars …There Is No Other Choice
    23:27
  19. 27.
    Turn Up the Volume - Raghav Gets a Cochlear Implant
    27:58
  20. 28.
    More Than You Can Handle (Part 1)
    29:46
  21. 29.
    More Than You Can Handle (Part 2)
    41:55
  22. 30.
    It's Not Humanly Possible Revisited
    12:04
  23. 31.
    Introducing Open Treatments: Making Rare Disease Research More Accessible
    25:42
  24. 32.
    Nicole Horvath: A Life of Outliving Cystic Fibrosis Expectations
    31:11
  25. 33.
    Breaking Down the Rare Disease Medical Bills
    30:28
  26. 34.
    The Unseen and Indirect Costs of Raising a Rare Child
    15:30
  27. 35.
    Brave Pioneers in DMD Terri And Billy Ellsworth - Part 1
    28:57

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