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… 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

 Nikki is a mother whose son’s 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.

In this episode, she and Ramya discuss Nikki’s 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.  

You can find her at https://raremamas.com/ or e-mail her at nikki@raremamas.com

PROGRAMMING NOTE:

We will be taking a break over the Holidays. 

We will be back in January to continue sharing Raghav’s story.

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Sound Design: Jacob Tompkins losstudiosnc@gmail.com

Graphics: Ramya Ramaswamy ramya@cureGPX4.org