Motherhood Reflections - Exploring Our Journeys and Fostering Emotional Wellness for Ourselves and Our Families with NDF Emotional Wellness Director Carol Gelbard
Release Date: 05/04/2022
Mother’s Day Episode: On Bonding and Being There
Rare Mamas Rising
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Shelly Meitzler is the Director of Community Support & Outreach at TSC Alliance, an internationally recognized nonprofit dedicated to Tuberous Sclerosis Complex (TSC), a rare genetic disorder causing tumors in various organs. With a personal journey spanning over two decades, Shelly's dedication stems from her own family's experience with TSC. As a parent of two children with TSC, Ashlin, and Mason, as well as daughter Mikenna, Shelly draws from her firsthand experience to offer invaluable insight and assistance to families navigating similar paths. Having volunteered in the TSC community...
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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...
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A Rare Adoption Story with Rare Mama Monica Poynter
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RARE MAMAS RISING- EPISODE 33 A Rare Adoption Story with Rare Mama Monica Poynter In honor of November National Adoption Awareness Month, guest Monica Poynter shares her incredible rare adoption story. Monica is a proud mother to her sons Tag and Trey and daughter Ophelia. Tag and Trey live with a rare bleeding disorder called hemophilia A, in which the blood does not clot properly. With no family history of the condition, their biological son Tag's diagnosis in 2014 came as a complete shock. Fast-forward to 2020, Monica and her husband Josh grew their family by adopting Trey...
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10 Minutes with Rare Mama Teri Furey - Larsen Syndrome Mom
Rare Mamas Rising
Teri is a hard-working, rare mama fiercely fighting for her son Beau, who has a rare condition called Larsen Syndrome. When Beau was born, all of his major joints were dislocated, and his spine had a curvature. Beau’s had eight major surgeries over the last ten years, and Teri and her husband Dan have been advocating for him every step of the way. In this episode, Teri shares how she never stops showing up for Beau, how she’s learned to accept a life of uncertainty, and how she loves watching how bright Beau shines! EPISODE HIGHLIGHTS All About Larsen Syndrome The ways...
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Demystifying Differences with Author, Speaker, and Rare Mama Megan DeJarnett
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Back-to-School Tips with Rare Mama Nikki McIntosh
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Mid-Year Reset with Rare Mama Nikki McIntosh
Rare Mamas Rising
RARE MAMAS RISING- EPISODE 29 Mid-Year Reset with Rare Mama Nikki McIntosh Join Nikki for a little mid-year check-in. In this episode, Nikki guides you through a step-by-step process to help you reflect on your “why,” review the last six months, and reset your path for the remainder of the year. This episode hopes to serve as a thought starter, a jumping-off point, and a catalyst to help you reflect on where you’ve been and recommit to where you’re going! CONNECT WITH NIKKI
info_outlineRARE MAMAS RISING- EPISODE 15
Motherhood Reflections: Exploring Our Journeys & Fostering Emotional Wellness For Ourselves & Our Families With NDF Emotional Wellness Director Carol Gelbard
In honor of Mother’s Day, this special episode invites rare mamas to reflect on our motherhood journeys and explore our emotional wellness. Guest Carol Gelbard stewards these explorations and provides insightful techniques and strategies from her 20+ years of experience performing individual, family, and group therapy in hospitals, schools, and private practice settings. Carol is the Emotional Wellness Director at the Neuromuscular Disease Foundation (NDF). NDF works to enhance the quality of life for those living with the rare muscle disease GNE Myopathy. NDF funds critical research focused on treatments and a cure and provides advocacy, education, and outreach. Carol was a member of the NDF Foundation board for eight years. She has led patient and caregiver groups covering various topics, including grief and loss, adjusting and implementing self-care plans, adopting effective coping skills, and helping manage stressors with a chronic progressive disease. Carol has also facilitated podcasts on stress management, promoting and supporting wellness, problems with ableism in our culture, and breaking the taboo of disability. She received a bachelor of science degree in psychology at UC Davis and a master’s degree in social work at UCLA. In this episode, Carol slows us down, guides us through understanding our current state of well-being, helps us discover ways to create a care plan that suits our individual preferences, and offers strategies to allow our families to process emotions. What a Mother’s Day gift!
EPISODE HIGHLIGHTS
- Grief triggers and how to cope with them in the moment
- Ways to manage stress responses and restore a sense of balance
- Finding and implementing personalized care practices to promote our well-being
- Making space for our family to process the highs and lows of living with a rare disease
LINKS & RESOURCES MENTIONED
Carol Gelbard
https://curegnem.org/about/leadership/our-team/carol-gelbard-lcsw/
Neuromuscular Disease Foundation
CONNECT WITH NIKKI
https://www.facebook.com/RareMamas1/
https://www.instagram.com/Rare_Mamas/