By Nikki McIntosh
5
2929 ratings
The podcast currently has 44 episodes available.
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 can grow our gratitude!
CONNECT WITH NIKKI
https://www.facebook.com/RareMamas1/
https://www.instagram.com/Rare_Mamas/
Website
https://raremamas.com/
[email protected]
PODCAST INFO
[email protected]
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 magic!
CONNECT WITH NIKKI
https://www.facebook.com/RareMamas1/
https://www.instagram.com/Rare_Mamas/
Website
https://raremamas.com/
[email protected]
PODCAST INFO
[email protected]
RARE MAMAS RISING- EPISODE 41
Loving with Every Breath with Breath Taking Author Jessica Fein
Jessica Fein is the author of Breath Taking: A Memoir of Family, Dreams, and Broken Genes and host of the "I Don't Know How You Do It” podcast, which features people whose lives seem unimaginable and who triumph over seemingly impossible challenges. Her writing has appeared in Newsweek, Psychology Today, The Boston Globe, HuffPost, Scary Mommy, Zibby Mag, Kveller, and more. Jessica is a relentless warrior in memory of her dynamic daughter, whom she lost to the rare disease MERRF Syndrome in 2022. Her work encompasses hope and humor, grit and grace–the tools that make up her personal survival kit. Jessica serves on the Board of Directors of MitoAction. She’s the mother of three, whom she and her husband adopted from Guatemala. In this episode, Jessica shares her powerful journey with raw honesty, wisdom, and heart. Join us as we explore the intertwined emotions of joy and sorrow, love and loss, and uncover why Jessica’s new book is truly a love story and a moving testament to the enduring power of love.
EPISODE HIGHLIGHTS
LINKS & RESOURCES MENTIONED
Jessica Fein
jessicafeinstories.com https://www.instagram.com/feinjessica/
https://www.facebook.com/jessica.fein.92/
https://www.linkedin.com/in/jessica-fein-b643b09/
https://podcasts.apple.com/us/podcast/i-dont-know-how-you-do-it/id1668168226
Breath Taking
jessicafeinstories.com
https://www.goodreads.com/author/show/826590.Jessica_Fein
Mito Action
https://www.mitoaction.org
CONNECT WITH NIKKI
Website
https://raremamas.com/
https://www.instagram.com/Rare_Mamas/
[email protected]
PODCAST INQUIRIES
[email protected]
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 and ensure both you and your child are as prepared as possible. Tune in for heartfelt support and practical strategies to make this challenging time a bit smoother.
CONNECT WITH NIKKI
https://www.facebook.com/RareMamas1/
https://www.instagram.com/Rare_Mamas/
Website
https://raremamas.com/
[email protected]
PODCAST INQUIRIES
[email protected]
RARE MAMAS RISING- EPISODE 39
Blazing Trails to Cure and Care with The Charlotte and Gwenyth Gray Foundation to Cure Batten Disease Founder Kristen Gray
Kristen Gray is an extraordinary mom of four incredible children: Charlotte, Gwenyth, Callan, and Gavin. From the moment her eldest two, Charlotte and Gwenyth, were diagnosed with Batten Disease, she embarked on a courageous journey blazing trails in rare disease advocacy. She founded The Charlotte & Gwenyth Gray Foundation to Cure Batten Disease and established The Gray Academy, a beacon of hope and education for children facing complex neurological disorders. Her unwavering dedication and pioneering spirit have been a driving force behind groundbreaking initiatives to find treatments and support families in similar situations. Join us as we delve into her inspiring story of resilience, hope, and relentless determination to change the future for her children and others.
EPISODE HIGHLIGHTS
LINKS
The Charlotte & Gwenyth Gray Foundation to Cure Batten Disease
Website: www.curebatten.org
Instagram: @curebatten Facebook: @curebatten
The Gray Academy
Website: www.thegrayacademy.org
Instagram: @thegrayacademy
Facebook: @thegrayacademy
CONNECT WITH NIKKI
Website
https://raremamas.com/
https://www.instagram.com/Rare_Mamas/
[email protected]
PODCAST INQUIRIES
[email protected]
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 nurturing deep connections with our children. Tune in to this touching tribute to the enduring bond between mothers and children, where simplicity reigns supreme and the beauty of being there shines brightest, especially on Mother’s Day.
CONNECT WITH NIKKI
https://www.facebook.com/RareMamas1/
https://www.instagram.com/Rare_Mamas/
Website
https://raremamas.com/
[email protected]
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 for 14 years before joining the Alliance in 2017, she's committed to empowering families with resources and support to advocate for themselves and their children. Her unwavering drive and passion make her a powerful advocate in the TSC community. In this episode, hear from this passionate advocate who offers sage wisdom for all parents navigating the rare disease road.
EPISODE HIGHLIGHTS
LINKS
TSC Alliance
https://www.tscalliance.org/
https://www.facebook.com/tscalliance
https://twitter.com/tscalliance
https://www.instagram.com/tscalliance/
CONNECT WITH NIKKI
Website
https://raremamas.com/
https://www.instagram.com/Rare_Mamas/
[email protected]
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
National Organization for Rare Disorders (NORD)
EveryLife Foundation
Global Genes
Rare Disease Legislative Advocates (RDLA)
Rare Action Network
CONNECT WITH NIKKI
https://www.facebook.com/RareMamas1/
https://www.instagram.com/Rare_Mamas/
Website
https://raremamas.com/
[email protected]
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 personal stories, Nikki equips rare mamas to embrace uncertainties, allowing them to step into the new year with flexibility and openness.
CONNECT WITH NIKKI
https://www.facebook.com/RareMamas1/
https://www.instagram.com/Rare_Mamas/
Website
https://raremamas.com/
[email protected]
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 published in the Chicago Tribune, the Chicago Sun-Times, and Cosmopolitan, as well as quoted in the New York Times, CNN, and People. She is the current board chair for the nonprofit CURE Epilepsy and also hosts their biweekly podcast, Seizing Life, where she interviews scientists, doctors, and individuals affected by epilepsy. Kelly resides in Maplewood, NJ, with her husband, Miguel Cervantes currently starring in Hamilton on Broadway, their children, and their dogs. In this episode, Kelly holds our hands and compassionately guides us through grief and healing, allowing us to feel normal broken together.
EPISODE HIGHLIGHTS
LINKS
Normal Broken
NormalBroken.com
Kelly Cervantes
Kellycervantes.com
Facebook.com/kellygc411
Instagram.com/kellygc411
Cure Epilepsy
https://www.cureepilepsy.org/
CONNECT WITH NIKKI
Website
https://raremamas.com/
https://www.instagram.com/Rare_Mamas/
[email protected]
The podcast currently has 44 episodes available.