{"href":"http://player.captivate.fm/services/oembed?url=http%3A%2F%2Fplayer.captivate.fm%2Fepisode%2F10971b39-ca55-451b-b310-50bed63de749","version":"1.0","provider_name":"Captivate.FM","provider_url":"https://www.captivate.fm","width":600,"height":200,"type":"rich","html":"","title":"Rare Mamas Part 2: Nikki McIntosh Moving from Distress to Prowess","description":"I just remember the feelings at the beginning. When my son was newly diagnosed, it was so overwhelming. It was frightening. I didn't know where to start. And I felt really alone\u2026 So Rare Mamas is my way of helping mothers, whose children are newly diagnosed with a rare disease disorder condition. I want to encourage them, uplift them, and empower them. Nikki McIntosh\n\nNikki is a mother whose son\u2019s condition, Spinal Muscular Atrophy (SMA), was treated with Spinraza (nusinersen) in clinical trials before it was approved. 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\nIn this episode, she and Ramya discuss Nikki\u2019s effort to support mothers whose children have been diagnosed with a rare disease. Her new venture seeks to provide practical resources that can help rare disease mothers through the fight of their lives. She offers advice on how to plan for self-care, how to choose a mindset, and how even how to arrange a date night during COVID. She helps mamas find the fighter within themselves. \n\nYou can find her at https://raremamas.com/ or e-mail her at nikki@raremamas.com\n\n PROGRAMMING NOTE: \n\nWe will be taking a break over the Holidays. We will be back in January to continue sharing Raghav\u2019s story.\n\n PLEASE DONATE to support research about GPX4 \n\n \nSound Design: Jacob Tompkins losstudiosnc@gmail.com\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"}