{"href":"http://player.captivate.fm/services/oembed?url=http%3A%2F%2Fplayer.captivate.fm%2Fepisode%2F57b7323d-802b-4448-abd5-2ab35f456bf3","version":"1.0","provider_name":"Captivate.FM","provider_url":"https://www.captivate.fm","width":600,"height":200,"type":"rich","html":"","title":"Anticipation: Experimental Drug Offers Hope","description":"\u201cIt was really painful to wait for this medicine to come. But I also believe that when it was the right time, it will definitely happen. And whatever happens, is for good.\u201d Ramesh \u2013 Baby Raghav\u2019s grandfather. \n\n\nWay back in episode 004, we heard Sanath talk about how hard it was to write the IND for compassionate use of an investigational drug. Having to express the possibility that his son may die without this intervention was one of the hardest things he has ever done. But he had to do it.\n\nIn this very special episode, we get an update on the IND and how far they have come with this experimental drug. We hear about the wait for word from the FDA and all the steps necessary to allow Raghav to get this treatment. This wait was made even longer by COVID-19. As you may have figured out by now, Ramya and Sanath handle good news and bad news differently. \n\nAs a special treat, we hear from Sanath\u2019s father, Ramesh. Raghav\u2019s very supportive grandparents have been living through this journey too. They have a slightly different perspective that highlights how a rare disorder affects multiple generations. \n\nOur discussion feels like a very big hill on a roller coaster. It\u2019s not the only hill they will face, but it is one of the larger ones. \n\nThis is one of our longer episodes, but we think you will find it worth your time.\n\nPlease Donate to cureGPX4 Thank You!\n\nSound Design and Music: Jacob Tompkins\n\nGraphic Design: Ramy Ramaswamy","thumbnail_width":300,"thumbnail_height":300,"thumbnail_url":"https://artwork.captivate.fm/114c3570-d7fd-4eda-abc1-ae10576d2204/RaisingRare_Logo-2-.png"}