This episode explores the realities of living with rare diseases, the importance of awareness, and the power of community and advocacy. Jill and Janine share their personal journeys with their children’s rare diagnoses, emphasizing the need for understanding, support, and systemic change.

keywords: rare disease, zebras, medical advocacy, diagnosis, community support, rare conditions, healthcare, patient stories

key topics:

Living with rare diseases

Importance of diagnosis and advocacy

Building community and support networks

Chapters:

00:00 Raising Awareness for Rare Diseases

05:13 The Challenge of Undiagnosed Conditions

10:13 Transitioning to Adulthood

15:13 The Importance of Understanding Rare Diseases

resources:

Rare Disease Day Official Site - https://www.rarediseaseday.org/

Camp Bogg Creek - https://www.boggycreek.org/

PubMed - https://pubmed.ncbi.nlm.nih.gov/

In this episode, Jill and Janine share their deeply personal experiences as mothers navigating the challenges of feeding tubes for their daughters. They discuss the emotional journey, the impact on parenting, and the importance of acceptance and advocacy in their children's care. Through their stories, they highlight the significance of nutrition, the role of feeding therapy, and the normalization of feeding tubes in public settings, emphasizing that parents are not alone in this journey. In this conversation, Janine and Jill share their experiences navigating the challenges of parenting children with feeding tubes. They discuss the emotional and practical aspects of managing feeding tubes, the importance of family mealtime, and the normalization of medical equipment in their children's lives. The conversation highlights the need for support, tips for managing feeding tubes, and reflections on the impact of feeding challenges on family dynamics. Ultimately, they emphasize hope and healing in the journey of parenting children with medical needs.

In this episode, Janine and Jill discuss the often-overlooked topic of advocacy burnout, particularly in the context of caregiving for children with medical needs. They explore the emotional toll that constant advocacy takes on caregivers, the symptoms of burnout, and the importance of self-care and support networks. The conversation highlights the grief associated with advocacy, the need for caregivers to teach their children to advocate for themselves, and the impact of burnout on family dynamics. Ultimately, they emphasize the importance of acknowledging one's struggles and finding strength in vulnerability.

#AdvocacyBurnout #SelfCare #ParentingJourney #MentalHealthMatters #SupportSystem #Resilience #Advocacy #Caregivers #EmotionalWellness #YouAreNotAlone

Teaching self-advocacy looks different when disability, medical complexity, or communication barriers are part of the story. In Episode 2 of our Advocacy mini-series, we explore how advocacy actually begins, what “finding your voice” means when words aren’t always available, and how caregivers support self-advocacy with safety, dignity, and compassion.

This episode is for caregivers, disabled individuals, and future providers navigating advocacy in medical, educational, and everyday settings — where being understood matters as much as being heard.

Join hosts Jill and Janine in "Advocacy 101" as they explore the essential role of advocacy in caregiving and medical spaces. Discover how to effectively use your voice to support loved ones with disabilities and chronic illnesses. This episode offers personal insights and practical advice on navigating complex systems, trusting your instincts, and empowering both caregivers and children. Perfect for parents, caregivers, and anyone interested in advocacy and empowerment. #Advocacy #Caregiving #Empowerment

Join hosts Jill and Janine as they kick off the new year with the second season of "Strength Happens." In this episode, they reflect on the past year's journey, sharing personal insights and professional goals for the podcast and their community. Dive into heartfelt discussions about caregiving, personal growth, and the power of storytelling. Discover how they plan to expand their reach and impact in 2026, with exciting plans for advocacy, interviews, and more. Tune in for an inspiring start to the year and learn how you can be part of this empowering community.

In this heartfelt episode, we sit down with Jill (the co-host of Strength Happens), the inspiring founder of The Halle Grace Foundation. Discover the touching story behind the foundation's inception, born from a promise to keep her daughter's legacy alive. Jill shares the mission of the foundation, which focuses on advancing education, support, and empowerment within the disability and medical communities. Tune in to learn how Jill's personal journey has transformed into a movement of compassion and resilience, touching lives and making a difference. Join us as we explore the power of giving back and the enduring impact of one remarkable young girl.

In this heartfelt episode, Janine and Jill reflect on their journey as caregivers to medically complex children, discussing the emotional challenges, the importance of self-care, and the need for community support. They share personal stories of navigating healthcare systems, making tough medical decisions, and the weight of responsibility that comes with being a caregiver. Through their candid conversation, they emphasize the significance of friendship and advocacy in their lives, encouraging listeners to find strength in shared experiences and to prioritize their own well-being amidst the challenges they face.