Our Mission

About:

Her Grief Her Strength was started as a blog and podcast project, and quickly has grown into a vibrant community of mothers and caregivers of medically complex children and those who have experienced grief related to child-loss. By taking the step to formally incorporate as a non-profit organization, we will be able to capitalize on the strength of our community to grow into an impactful charity, providing additional resources and services to our members and the broader community.

Mission Statement:

Her Grief, Her Strength, is a community built to connect, support, and empower. We serve as a hub for finding strength, hope, and inspiration as we navigate life’s hardest challenges together, with a focus on mothers and caregivers of medically complex and disabled children, as well as those who have experienced grief related to child-loss. HGHS is a community organization first and foremost, and seeks to uplift its members and others alike in navigating the complexities of medical parenthood and life after loss. We underscore our community mission with work as advocates for rare disease awareness, healthcare reform, mental health, and other issues that make life more challenging for those in similar positions. 

Our Plan:

  • Continue to grow our virtual community and facilitate connections between families facing similar challenges, and those who understand the complexities of grief and medical parenting.

    • NEW! A private online community where members can share stories, ask questions, and meet others.

    • NEW! Medical device/equipment sharing network for parents and caregivers.

      • Connect parents who may have extra supplies with those who are in need of those supplies, especially those dealing with health insurance issues or financial restraints.

  • Share content targeted to caregivers focusing on grief, strength, and medical parenting, primarily via HGHS podcast and blog.

    • Blog posts sharing personal stories, practical advice for navigating the medical world, and grief resources.

    • Podcast featuring unfiltered conversations about grief, resilience, and what it means to parent through adversity. 

    • Interviews with doctors, advocates, and other professionals offering insights and resources to help you navigate your journey.

  • Provide resources to empower parents and loved ones to advocate for their children and loved ones.

    • Guides: Step-by-step instructions for tackling common challenges like advocating for better care or navigating complex medical systems.

    • Templates: Pre-written scripts, emails, and letters for communicating with lawmakers, healthcare providers, and schools.

    • Action Plans: Clear, actionable ways to get involved in causes that matter, from signing petitions to raising awareness in your community.

Meet the Moms Behind the Mission

We’re Rachel and Shelby, two best friends, bonded by motherhood, grief, and the wild, messy beauty of medical parenthood.
Her Grief, Her Strength was born from what we couldn’t find when we needed it most: a space that gets it.
A place to be raw, to be held, to feel less alone.
We built this community for the ones carrying impossible things, because we’ve carried them too.
Here, your story matters. Your grief belongs. And your strength is never questioned.

  • Co-Founder

    Rachel’s journey into motherhood began in February 2024 when she welcomed her first baby, Cassie. From the very beginning, Rachel knew something was wrong. Cassie cried out in pain, inconsolable at times, and no one had answers. After months of pushing for clarity through test after test, Rachel finally heard the words no parent ever should… Krabbe Disease, a rare and terminal genetic condition that attacks the nervous system.

    The diagnosis shattered her world. But even in the grief, Rachel fought like hell, for answers, for comfort, for time. She became Cassie’s full-time caregiver, advocate, and fierce protector. And in June of 2025, Rachel and her husband said goodbye to their baby girl, holding her in love as she took her last breath at home.

    Through the unimaginable, Rachel discovered how isolating, exhausting, and disempowering the medical world can be for parents like her. She co-founded Her Grief, Her Strength because no parent should feel as alone as she once did. This platform is Cassie’s legacy, a space where grief is honored, medical families are seen, and strength looks like showing up, even when it hurts.

    Rachel’s mission is simple: no one should walk this path alone.

  • Co-Founder

    Shelby’s life shifted forever in May 2024 when her second daughter was born with multiple complex medical diagnoses: Spina Bifida, Chiari II, Hydrocephalus, HPE, and PPH. The moment she became a “Med Mom,” everything changed. She was thrown into a world of hospital stays, urgent surgeries, and a never-ending calendar of specialists, all while learning how to care for a child whose needs didn’t come with a manual.

    Since then, Shelby has become an unshakable advocate, not only for her daughter, but for all medically complex children and the families who love them. She knows firsthand how exhausting, isolating, and overwhelming this life can be. And she’s made it her mission to make it less lonely.

    Through Her Grief, Her Strength, Shelby is helping build a world where no parent has to walk this road without support. She’s not just sharing resources, she’s creating space for raw conversations, hard days, and quiet victories. Because every family deserves to feel seen, heard, and lifted up.

What You’ll Find Here

When you join Her Grief, Her Strength, you’re not just entering a group — you’re stepping into a space created for you.
A space to be seen. To be supported. To be surrounded by people who truly get it.
Here’s what you can expect inside our community:

Our Blog: Where Stories Become Action

The blog is the beating heart of Her Grief, Her Strength a place where lived experience meets community care.

Here’s what you’ll find:

  • Personal Stories: Raw, unfiltered reflections from our lives as medical moms, grieving moms, and women navigating the unimaginable. We write to connect — to say the hard things out loud so no one feels alone in them.

  • Practical Tools: Real-world tips for advocating in medical spaces, balancing caregiver burnout, and surviving life after diagnosis or loss.

  • Advocacy Spotlights: We raise our voices for Rare Disease awareness, equitable newborn screening, and healthcare accessibility — and we give you the tools to join us.

Your story matters here. And your voice is part of a larger movement to create change, raise awareness, and fund the future of rare disease care

Our Podcast: Real Conversations for Hard Roads

The Her Grief, Her Strength podcast is like sitting with two friends who don’t flinch when things get heavy. We go there — because we’ve been there.

What you’ll hear:

  • Honest Conversations: Grief, advocacy, diagnosis days, small wins, and total meltdowns — nothing is off-limits.

  • Guest Voices: Medical professionals, therapists, disability advocates, and other changemakers offering insight, validation, and support.

  • Shared Experiences: Parents sharing their stories — because there’s power in being heard, and healing in being understood.

Every episode is created with inclusion, honesty, and compassion at its core — because no one should have to face this journey alone.

Advocacy Resources: Tools to Take Action

We know what it feels like to be silenced, dismissed, or ignored in the rooms where decisions are made. That’s why we’re building advocacy tools for families like ours, to make sure our voices are heard.

Inside our advocacy toolkit, you’ll find:

  • Guides to help you navigate medical systems, IEP meetings, and state policies

  • Templates to contact lawmakers, hospitals, and insurance providers

  • Action Plans for raising awareness about Rare Diseases, newborn screening, and disability justice

As a nonprofit, we’re committed to expanding access, shifting narratives, and raising funds to support Rare Disease research and care. Advocacy isn’t just a cause, it’s personal.

coming soon!

A Community You Can Count On

At its core, Her Grief, Her Strength is about belonging.

We’ve created a trauma-aware, grief-informed community that honors your story and meets you exactly where you are, whether you're deep in the grief, just starting your medical parenting journey, or somewhere in between.

Here’s what we hold space for:

  • Safety: A judgment-free space where your grief is welcome, your voice is valued, and your boundaries are respected.

  • Support: A community of parents, caregivers, and advocates who understand how layered this life is.

  • Growth: Resources, conversations, and connection points to help you find your strength, not in spite of what you’ve lived through, but because of it.

As a nonprofit, every story shared and dollar raised brings us closer to a world where families like ours are seen, supported, and never forgotten.