Rare Mamas Rising Nikki McIntosh

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
Background about Shelly and her family  All about Tuberous Sclerosis Complex Navigating the very different paths of two children with TSC How Shelly became involved with TSC Alliance and her role today Advice for parents interested in getting involved with a patient advocacy group or non-profit organization The importance of community building and involvement in rare disease advocacy Shelly’s learnings and advice for other rare parents  
 
 
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/
Instagram
https://www.instagram.com/Rare_Mamas/
Email
info@raremamas.com

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
info@raremamas.com

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
info@raremamas.com

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
info@raremamas.com

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
info@raremamas.com
 

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
info@raremamas.com