The Rare Advocates

When an architect’s life took an unexpected turn with her daughter’s rare disease diagnosis, she combined her professional expertise and caregiving journey to create a Beginner’s Guide to Accessible Home Design. In this episode of The Rare Advocates, she shares how her experience as a mom and architect inspired practical, affordable, and inclusive design tips to transform homes for families navigating rare diseases and disabilities.

✨ Link to Guide: https://agsaa.org/accessibility-guide

Join us as we delve into the inspiring journey of Stephanie, a devoted mother and caregiver, as she shares her experiences raising a daughter with a rare disease. Discover how Stephanie's passion for inclusivity led her to become a prominent advocate for accessible playgrounds, challenging norms, and driving change. Gain insights into her strategies for influencing facilities and parks to prioritize inclusivity, and learn how you can support her mission to create more inclusive spaces for children with disabilities. Don't miss this empowering episode of our Rare Disease and Disability Podcast!

Join us as we sit down with Megan, a courageous mother and founder of the Aicardi Goutières Syndrome Advocacy Association, as she shares her heartfelt journey. From the challenges of navigating the medical system to finding hope in the midst of adversity, Megan opens up about her experiences raising a child with AGS and coping with the profound loss of her daughter. Discover the strength, resilience, and invaluable insights she offers to families facing rare diseases and grief. Tune in to gain a deeper understanding of AGS and find inspiration in Megan's unwavering advocacy and enduring love.

Explore the transformative journey of a Pediatric Rare Disease Geneticist, Cynthia Gubbels, MD, PhD, as they transition from the clinical realm of Boston Children's Hospital to the cutting-edge landscape of biotech innovation. Join us on Rare Advocates as we uncover the passion, perseverance, and promise driving this trailblazer's quest to unlock the mysteries of rare syndromes. Gain insights into the intersection of research, clinical practice, and biotech advancement, offering a beacon of hope to families, caregivers, and future medical leaders. Tune in for a compelling narrative of resilience and progress in pursuing rare disease solutions.

Join us for an enlightening conversation on Cerebral/Cortical Visual Impairment (CVI) in the context of rare diseases with our special guest, Rachel G. Bennett, the esteemed Director of CVI Now Services at Perkins School of Blind. As we delve into the unique challenges faced by individuals with rare diseases and CVI, Rachel shares her expertise, personal anecdotes, and innovative approaches to support those navigating this complex intersection.

🌟 Join us for a thought-provoking conversation on The Rare Advocates Podcast, where I sit down with Jennifer Siedman, Director of Community Engagement at Courageous Parents Network (CPN) and NeuroJourney.org. In this episode, we delve into the invaluable resources provided by CPN and NeuroJourney, empowering caregivers to navigate the complexities of caring for children with severe neurological impairments.

https://courageousparentsnetwork.org/
Courageous Parents Network (CPN) is a nonprofit organization that provides curated digital resources and programming to help caregivers navigate the illness journey with support and a sense of community.
https://neurojourney.org/NeuroJourney (NeuroJourney.org) is an educational resource for families and clinicians navigating the ever-evolving needs of a child with severe neurological impairment (SNI). It explores the interconnected medical considerations in phases as they might occur in the illness journey, and social and emotional experiences of family and other caregivers

👶 Embark on a crucial journey into the world of newborn screening for leukodystrophies with Lesa Brackbill, an expert from the Newborn Screening Network. In this enlightening episode of the Rare Advocates Podcast, we unravel the significance of early detection, explore cutting-edge screening technologies, and gain insights from the dedicated experts shaping the future of pediatric health.

In this episode of the Rare Advocates Podcast, I sit down with Jonah to learn his AGS story. We learn more about when he was diagnosed, what his family went through, and what it is like living with Aicardi Goutieres Syndrome. We talk about the wide spectrum of symptoms, his point of view, and his personal motto.

What is special education? When does special education begin? How does one apply for special education? Can one graduate from special education? In this episode, we sit down with Dr. Valerie Burnett and discuss what all parents need to know about Special Education, from Early Childhood Intervention to entering school and evaluations.

🌟 Join us on The Rare Advocates Podcast as we delve into the inspiring journey of Lauren Lowery, a devoted mother navigating the challenges of Aicardi Goutieres Syndrome. In this heartfelt episode, Lauren generously shares her experiences as a caregiver, shedding light on the highs and lows, joys and triumphs.

🤝 As a dedicated advocate, Lauren not only cares for her family but also spearheads a mission to support fellow moms and caregivers facing similar situations. Discover how she balances the demands of family life, entrepreneurship, and her unwavering commitment to making a positive impact.

🌈 This episode is a beacon of hope for those navigating the complexities of caregiving. Join us in exploring the resilience, love, and strength that define Lauren's journey. Whether you're a caregiver seeking solidarity or someone eager to understand the intricacies of Aicardi Goutieres Syndrome, this conversation is a must-listen

Lauren's Socials: https://www.instagram.com/lauren_nia_lowery/

https://m.facebook.com/p/Overcome-the-Overwhelm-for-Special-Needs-Moms-100065114523894/

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