A North Star In A Rare Universe with Cure Founder and Rare Mom Caroline Cheung-Yiu
Release Date: 04/13/2022
Growing Our Gratitude
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RARE MAMAS RISING- EPISODE 43 Growing Our Gratitude with Rare Mama Nikki McIntosh This Thanksgiving, join us to explore the powerful impact gratitude can have on our rare journeys. We’ll dive into how simple acts of thanks can elevate our spirits, strengthen our health, and deepen our relationships with the incredible providers who support us every day. We’ll uncover the science behind gratitude’s high-vibrational energy and share practical ways to honor the people who make a difference in our lives. Tune in to celebrate the strength of our community and discover how we...
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Adapting Halloween Traditions
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RARE MAMAS RISING- EPISODE 42 In this special Halloween episode of Rare Mamas Rising, we explore how to make Halloween fun, inclusive, and accessible for children with rare diseases. Nikki shares personal stories and practical tips, including creative trick-or-treating alternatives, sensory-friendly activities, and adaptive costume ideas. Whether your child uses a wheelchair, has sensory sensitivities, or faces other challenges, this episode offers ideas to help you celebrate the spooky season in a way that works for your family. Join us for insights, new traditions, and a little Halloween...
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Loving With Every Breath with Breath Taking Author Jessica Fein
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Preparing for a Planned Hospital Stay
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RARE MAMAS RISING- EPISODE 40 Preparing for a Planned Hospital Stay with Rare Mama Nikki McIntosh In this episode of Rare Mamas Rising, host Nikki dives into the vital preparations for managing your child’s upcoming surgery or medical procedure. Nikki, sharing from her own experience with her son Miles, offers a comprehensive guide to help you navigate the emotional and logistical challenges of hospital stays. From educating yourself and organizing support to practical tips for during and after the hospital visit, this episode is packed with actionable advice to ease your anxiety...
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Blazing Trails to Cure and Care with The Charlotte and Gwenyth Gray Foundation to Cure Batten Disease with Founder Kristen Gray
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Mother’s Day Episode: On Bonding and Being There
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RARE MAMAS RISING- EPISODE 38 Mother’s Day Episode: On Bonding & Being There with Rare Mama Nikki McIntosh Join host Nikki on a heartfelt journey of motherhood in a special Mother's Day episode. From grand visions of bonding through shared interests to the reality of simply being present through life's challenges, Nikki shares personal anecdotes and insights that illuminate the essence of maternal love and resilience. Reflecting on her own experiences with her sons and the impact of rare diseases on their journey, Nikki celebrates the power of unwavering support and trust in...
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Paying It Forward with TSC Alliance Director of Community Support and Outreach Shelly Meitzler
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Transforming Love Into Advocacy
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RARE MAMAS RISING- EPISODE 36 Transforming Love Into Advocacy with Rare Mama Nikki McIntosh In honor of Rare Disease Day, we explore how a mother’s love transforms into impactful advocacy, empowering us to conquer challenges and ignite change. In this episode, discover the passionate spirit that fuels our fight and learn practical tips for channeling love into action. Don’t miss this episode as you gear up for advocating on Rare Disease Day and throughout the year! LINKS & RESOURCES MENTIONED CONNECT WITH NIKKI
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Charting the Unknown - Navigating the New Year Amid Uncertainty
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RARE MAMAS RISING- EPISODE 35 Charting the Unknown: Navigating the New Year Amid Uncertainty with Rare Mama Nikki McIntosh The beginning of a new year provides a prime opportunity to establish goals, set intentions, and chart a course for the months ahead. However, the unpredictability of rare diseases can derail even the most thought-out plans. Navigating this delicate balance between planning and flexibility is a challenge. Join Nikki in this episode as she delves into strategies for navigating the uncharted territories of the new year. Through proactive approaches, practical tips, and...
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Navigating Grief and Healing with Normal Broken Author Kelly Cervantes
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RARE MAMAS RISING- EPISODE 34 Navigating Grief and Healing with Normal Broken Author Kelly Cervantes Kelly Cervantes is the author of Normal Broken: The Grief Companion for When it's Time to Heal But You're Not Sure You Want To. Kelly is an award-winning writer, speaker, and advocate best known for her blog Inchstones, where she shared the stress, love, and joy that came with parenting her medically complex daughter, Adelaide. Since Adelaide's passing, Kelly has continued to write candidly about her arduous and, at times, contradictory grief journey. She has been...
info_outlineA North Star in a Rare Universe with CURE Founder and Rare Mom Caroline Cheung-Yiu
For over 12 years, a cruel and debilitating disease slowly robbed Caroline’s son Alex of his abilities. Countless medical and genetic tests and some of the best physicians, scientists, and researchers in the world were perplexed by Alex’s condition. Then in 2018, through miraculous intervention, Alex’s genetic data was reanalyzed, and he was found to have a newly discovered, rare, non-inherited, spontaneous genetic disease called NEDAMSS (Neurodevelopmental Disorder with Regression, Abnormal Movements, Loss of Speech, and Seizures) or IRF2BPL related disorder. During the time Caroline was relentlessly seeking answers for her son’s constantly shifting illness, she created a community called Complex, Undiagnosed, Rare, and Extraordinary (CURE). CURE connects families lacking a diagnosis for their child and empowers them with local resources to forge ahead in their diagnostic odyssey. Caroline believes we are all stars lighting up the sky in the rare universe, and once you meet Caroline, you’ll undoubtedly see why for those in the undiagnosed community, she’s a “North Star!”
EPISODE HIGHLIGHTS
- The unlikely way Alex's diagnosis was ultimately discovered (you won’t believe it)
- How Caroline maintained hope as years passed without answers
- Caroline's best resources and insights for parents whose children are still on a diagnostic journey
LINKS & RESOURCES MENTIONED
Caroline Cheung-Yiu
Undiagnosed Disease Network - NIH
https://undiagnosed.hms.harvard.edu/about-us/
Rare Genomes Project - The Broad Institute
Center for Rare Childhood Disorders - TGen
https://www.tgen.org/patients/center-for-rare-childhood-disorders/
Precision Medicine Clinic - Rady Children's Genomic Institute
https://radygenomics.org/families/
Manton Center for Orphan Disease Research - Boston Children's Hospital
iHope Genetic Health - Illumina and Genetic Alliance
https://ihopegenetichealth.org/
CONNECT WITH NIKKI
https://www.facebook.com/RareMamas1/
https://www.instagram.com/Rare_Mamas/