By Nikki McIntosh
The podcast currently has 39 episodes available.
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]
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 from an orphanage in China after being inspired by a magazine story about another family who had done the same. The brothers became instantly inseparable, bonded by adoption and their shared condition. Now, the family has another exciting addition with the birth of their daughter, Ophelia. In this episode, Monica shares her family's story of adoption, her journey caring for children living with the same rare condition, and words of inspiration for fellow rare mamas!
EPISODE HIGHLIGHTS
Tag's Hemophilia A diagnosis
How Monica and Josh rose to the challenge of rare parenting
The road to Trey's adoption
Caring for two children with rare diseases
Tag and Trey's bond
Advice for families interested in adoption
The addition of daughter Ophelia and life today
Monica's best learnings for other rare mamas
LINKS
Kentucky Hemophilia Foundation
https://www.kyhemo.org/index.php
Hemophilia Federation of America
https://www.hemophiliafed.org/
Hemlibra®
https://www.hemlibra.com/
CONNECT WITH NIKKI
Website
https://raremamas.com/
https://www.instagram.com/Rare_Mamas/
[email protected]
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
LINKS & RESOURCES MENTIONED
Teri Furey
https://www.instagram.com/terifurey/
Larsen Syndrome
https://rarediseases.org/rare-diseases/larsen-syndrome/
CONNECT WITH NIKKI
https://www.facebook.com/RareMamas1/
https://www.instagram.com/Rare_Mamas/
Website
https://raremamas.com/
[email protected]
RARE MAMAS RISING- EPISODE 031
Demystifying Differences with Author, Speaker, & Rare Mama Megan DeJarnett
Megan is an author, speaker, disability DEI educator, inclusion advocate, and mom to two boys. She was diagnosed with SMA at age two, but Megan didn't think much about her differences until she became the mother of a child with special needs. When Megan found herself having to answer questions about his differences, it sparked a passion in her to teach children the ways in which everyone is unique. Today, Megan is the organizational founder of No Such Thing, a company with a mission to help others redefine purpose by removing defining labels. She's the author of the children's books No Such Thing as Normal and Lovely as Can Be. In this episode, Megan shows us how she’s demystifying differences and spreading her life’s mission of living without limits!
EPISODE HIGHLIGHTS
Megan's experience growing up with a rare disease
How Megan's using her experience while parenting her sons
What drove Megan to write a book and start a company
The mission and goals of Megan’s company No Such Thing As Normal
How we as parents can promote diversity, equity, and inclusion
Megan's best advice for other rare mamas
LINKS & RESOURCES MENTIONED
Websites
nosuchthing.co
megandejarnett.co
@nosuchthing.co
@megandejarnett
CONNECT WITH NIKKI
Website
https://raremamas.com/
https://www.instagram.com/Rare_Mamas/
[email protected]
RARE MAMAS RISING- EPISODE 30
Back-to-School Tips with Rare Mama Nikki McIntosh
Back-to-school is a busy time for any household, and for families of children with rare diseases, back-to-school may come with even more preparations and to-dos. We are doing all the typical things like getting school supplies and clothing ready to go, but we’re also communicating with case carriers and ensuring services and supports are in place. Over the years, Nikki’s figured out a few systems to help rare families prepare for a new school year. These tips are tried and true from one rare mama to another. Check out this episode, and get some practical advice and a little encouragement as you get ready for back to school!
CONNECT WITH NIKKI
https://www.facebook.com/RareMamas1/
https://www.instagram.com/Rare_Mamas/
Website
https://raremamas.com/
[email protected]
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
https://www.facebook.com/RareMamas1/
https://www.instagram.com/Rare_Mamas/
Website
https://raremamas.com/
[email protected]
The podcast currently has 39 episodes available.