“I didn’t realize how alone I was.”

For Prader-Willi Syndrome (PWS) awareness month, we are sharing a discussion with Jessica Patay, founder of We Are Braver Together. PWS requires 24/7 vigilance over a child whose appetite is unsatiable. This can become isolating, exhausting, and overwhelming to even the strongest moms. Jessica has turned her experience into a lifeline for other rare moms.

We Are Brave Together emerged from the recognition that the girlfriend retreats she was hosting would be very helpful to moms who are caregivers. As these retreats have grown, she has helped many women feel like they belong. We Are Brave Together is built on the idea that human beings deserve to be seen, heard, understood, and validated. The retreats, the podcasts, the books all work to bring these moms together to share their stories.

Her first book, Becoming Brave Together, was to share stories. The new book Suddenly Brave Together is a collection of letters from moms who have adult rare children to the new moms who have just gotten a diagnosis. Many hands and hearts reaching out across the universe saying, “You are not alone.”