{"href":"http://player.captivate.fm/services/oembed?url=http%3A%2F%2Fplayer.captivate.fm%2Fepisode%2Ff266826a-af22-4fe9-b6e3-460ab7eafb8c","version":"1.0","provider_name":"Captivate.FM","provider_url":"https://www.captivate.fm","width":600,"height":200,"type":"rich","html":"","title":"Rare Mamas Part 1: Nikki McIntosh and Ramya On Choosing Hope","description":"I am so happy. I feel like that is exactly what I want to convey through my son's life, through our family, through Rare Mamas is that hope. Because you know, so many of us that receive a rare diagnosis for our children we are given these scariest statistics, we are given those unimaginable possibilities. \nNikki McIntosh, founder of Rare Mamas. \n\n\nOn Raising Rare we promise to talk about all the aspects of raising a child with a rare disease. In this episode, we listen in on a heart-to-heart discussion between two mothers who are on this journey. You can almost smell the tea brewing as they talk about reaching those difficult forks in the emotional road. \n\n Nikki is a mother whose son\u2019s condition, Spinal Muscular Atrophy (SMA), was treated with Spinraza (nusinersen) before it was approved. In fact, it was in clinical trials. Her son is doing well and regaining some strength. In light of her own experience, Nikki has started RareMamas.com in an effort to help other mothers who have recently received a rare diagnosis for their child. Rare Mamas will be a safe place for new mamas to go to share their stories, share their worries, and get the support they so desperately need. \n\nNext time, we will finish our discussion with Nikki McIntosh. \n\n PLEASE DONATE to support research about GPX4 https://cureGPX4.org\n\n Sound Design: Jacob Tompkins losstudiosnc@gmail.com \n\nGraphics: Ramya Ramaswamy ramya@cureGPX4.org","thumbnail_width":300,"thumbnail_height":300,"thumbnail_url":"https://artwork.captivate.fm/114c3570-d7fd-4eda-abc1-ae10576d2204/RaisingRare_Logo-2-.png"}