Rare Mamas Rising: A Rare Disease Mom Podcast

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

Facebook

https://www.facebook.com/RareMamas1/

Instagram

https://www.instagram.com/Rare_Mamas/

Website

https://raremamas.com/

Email

[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

Facebook

https://www.facebook.com/RareMamas1/

Instagram

https://www.instagram.com/Rare_Mamas/

Website

https://raremamas.com/

Email

[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

• Background about Kelly and her family
• The journey to writing Normal Broken, and the impact of writing through pain
• Navigating anticipatory grief while parenting a medically complex child
• Managing comparative and competitive grief
• What to do when you're struggling to feel gratitude
• Communicating your needs to your partner and understanding your partner's needs when they are different than your own
• Taking steps to find and build a community
• Kelly's learnings and advice for other rare mamas

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/

Instagram

https://www.instagram.com/Rare_Mamas/

Email

[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/

Instagram

https://www.instagram.com/Rare_Mamas/

Email

[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

• All About Larsen Syndrome
• The ways Teri rises to meet the challenges of being a rare mama
• Teri's favorite quote that inspires her to keep going
• Where Teri finds hope
• Teri's best advice for other rare mamas

LINKS & RESOURCES MENTIONED

Teri Furey

https://www.instagram.com/terifurey/

Larsen Syndrome

https://rarediseases.org/rare-diseases/larsen-syndrome/

CONNECT WITH NIKKI

Facebook

https://www.facebook.com/RareMamas1/

Instagram

https://www.instagram.com/Rare_Mamas/

Website

https://raremamas.com/

Email

[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

Instagram

@nosuchthing.co

@megandejarnett

CONNECT WITH NIKKI

Website

https://raremamas.com/

Instagram

https://www.instagram.com/Rare_Mamas/

Email

[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

Facebook

https://www.facebook.com/RareMamas1/

Instagram

https://www.instagram.com/Rare_Mamas/

Website

https://raremamas.com/

Email

[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

Facebook

https://www.facebook.com/RareMamas1/

Instagram

https://www.instagram.com/Rare_Mamas/

Website

https://raremamas.com/

Email

[email protected]

RARE MAMAS RISING- EPISODE 28

A Moving Mission with The Stiff Person Syndrome Research Foundation Founder and President Dr. Tara Zier

In 2017, Dr. Tara Zier, a graduate of the VCU School of Dentistry and Virginia Tech, a black belt in karate, and a mother of two, was forced to leave a twenty-year career in dentistry and stop the practice of karate due to Stiff Person Syndrome. Today, Zier is the founder and president of The Stiff Person Syndrome Research Foundation (SPSRF), which she established in 2019 to raise awareness and funds for better treatments and a cure. In 2021, The SPSRF was selected to receive a three-year "Rare As One" grant from the Chan Zuckerberg Initiative, and in 2022, Zier established a Medical Advisory Board, including neurologists from Mayo Clinic, Johns Hopkins Medicine, and others. Zier and The SPSRF have been featured in The Washington Post, Voice of America, ABC News in Washington, and various media outlets worldwide. In this episode, Dr. Zier exudes strength of purpose as she fights for treatment and better quality of life for those with Stiff Person Syndrome. She won't be still as she moves forward on her mission!

EPISODE HIGHLIGHTS

• All about Stiff Person Syndrome and why so many patients go through a diagnostic odyssey
• The Stiff Person Syndrome Research Foundation's mission and future plans
• How Dr. Zier juggles motherhood, running The SPSF, and being a patient
• How Celine Dion's Stiff Person Syndrome diagnosis elevated SPS awareness
• Where Dr. Zier finds hope and motivation
• How Dr. Zier has learned to put firm boundaries around her time and energy
• Dr. Zier's best advice to other rare mamas

LINKS & RESOURCES MENTIONED

The Stiff Person Syndrome Research Foundation

Website: http://www.stiffperson.org/

Twitter: https://twitter.com/TheSPSRF

Instagram: https://www.instagram.com/stiff_person_syndrome/

Facebook: https://www.facebook.com/TheSPSRF

LinkedIn: https://www.linkedin.com/company/the-stiff-person-syndrome-research-foundation/

Chan Zuckerberg Rare As One Initiative

https://chanzuckerberg.com/science/programs-resources/rare-as-one/

Celine Dion Announces Stiff Person Syndrome Diagnosis

https://www.ctvnews.ca

CONNECT WITH NIKKI

Facebook

https://www.facebook.com/RareMamas1/

Instagram

https://www.instagram.com/Rare_Mamas/

Website

https://raremamas.com/

Email

[email protected]

RARE MAMAS RISING- EPISODE 27

Mother's Day Episode - Enduring, Planting, and Blooming with Rare Mama Nikki McIntosh

In honor of Mother's Day, pull up a chair and grab a cup of tea (or vodka) and join Nikki for a little heart-to-heart. She's talking about motherhood and sharing a message that's been on her heart. Sometimes in rare motherhood, there are seasons that feel like long winters. Nikki offers a few thoughts on how to approach these seasons as we await spring. Don't miss this episode–it's short and sweet but packed with an encouraging and meaningful message. Like a bouquet of freshly picked Mother's Day flowers sent out to every single rare mama. Happy Mother's Day from one rare mama to another!

CONNECT WITH NIKKI

Facebook

https://www.facebook.com/RareMamas1/

Instagram

https://www.instagram.com/Rare_Mamas/

Website

https://raremamas.com/

Email

[email protected]