“The Rare Mamas Rising podcast is an incredible resource for RARE caregivers; heck, great for ALL caregivers! Nikki hosts from the heart and digs deep with her guests to bring substance and support to all her listeners.”
Deb Ayres, President, The Avalon Foundation
With a personal journey spanning over two decades, discover the heartfelt story of Shelly Meitzler, a devoted advocate empowering families impacted by tuberous sclerosis complex. Listen Now
In honor of Rare Disease Day, this episode explores the boundless powers of a mother's love and how to channel it into meaningful advocacy.Listen Now
Join Nikki in this episode as she delves into strategies and practical tips for navigating the uncharted territories of the new year!Listen Now
Kelly draws on her personal experiences to compassionately lead us through the journey of processing grief and understanding the path to healing. Listen Now
Monica shares her incredible story of adopting a son with the same rare blood disorder as her biological son and her journey caring for children living with the same rare condition.Listen Now
In this bite-sized episode, Teri shares how she rises to the challenge of being a rare mama and never stops showing up for her son Beau. This mama and son duo shine bright! Listen Now
Through her children's books and company, Megan is on a mission to demystify differences, and she's teaching us how to do the same! Listen Now
Get schooled for school! In this episode, Nikki serves up ten tried-and-true tips to help you and your kiddos get back-to-school ready!Listen Now
Join Nikki for a little mid-year check-in to revisit our why, reflect on the last six months, and reset our paths for the remainder of the year.Listen Now
Dr. Zier exudes strength of purpose as she moves towards her mission of treatment and better quality of life for those living with Stiff Person Syndrome.Listen Now
In honor of Mother's Day, join Nikki for a little heart-to-heart as she shares a few meaningful and encouraging thoughts on the seasons of rare motherhood. Listen Now
Understanding the impact of a rare disease from both a scientific perspective and a personal parent viewpoint, Dr. Aldinger shares her valuable insights! Listen Now
To mark the 25th episode, Nikki reflects on the compelling conversations in the previous episodes, and the meaningful takeaways we can all use on our rare walk.Listen Now
Daniel discusses the power of telling our stories, engaging with the rare community, finding connection, and creating impact.Listen Now
Maria models advocacy prowess, as she discusses growing up with a rare condition, learning to champion her disease, and living her life without limitations.Listen Now
Melissa exudes courage and grace as she discusses shifting perspectives, embracing this life, making the most of it, and finding meaning and purpose along the way.Listen Now
Tameka is using her voice to advocate and make change, not only for her daughter Evely, but for other children and families with disabilities. In this episode, Tameka shares her bright vision! Listen Now
In this bite-sized episode, former UFC fighter, Amanda shares her calling to help her daughter fight ALG13. This episode packs a punch! Listen Now
Nicole is a rare mama to Josie with FOXG1 and co-founder and executive director of the FOXG1 Research Foundation. She's doing big things for FOXG1 and for the rare disease community, and in this episode, she spreads knowledge, happiness hacks, and hope! Listen Now
In honor of SMA Awareness month, SMA mom Danyelle Sun shares her story and uses her advocacy skills and experience to help us elevate our advocacy!Listen Now
Rare mama Deb Ayres shares her journey navigating Hypophosphatasia with her daughter Avalon and why they started The Avalon Foundation to help kids learn to care for other kids. This episode is jam-packed with great tips for navigating rare life from a certified life coach! Listen Now
In this special Father's Day episode, Tony McIntosh shares his journey, offers his best learnings, and gives insight into the rare dad's perspective. Happy Father’s Day to all the rad rare dads! Listen Now
In this special Mother's Day episode, Carol brings her 20+ years of therapy experience to help rare mamas explore aspects of emotional wellness including coping with loss and grief, managing stress, and taking care of our wellbeing. Listen Now
A diagnosis of IRF2BPL related disorder finally brought an answer to a 12-year diagnostic odyssey for Caroline's son Alex and now Caroline is on a mission to support other undiagnosed patients.Listen Now
In this bite-sized episode, Catherine shares the lessons she's learned navigating her son Shawn's very rare form of congenital nephrotic syndrome. Listen Now
Meet the incredible women behind the TV series "Behind the Mystery," and learn why they are so deeply dedicated to raising awareness for rare and genetic diseases. Listen Now
Dr. Katia Moritz shares her story about being a mom to children with a rare disease, her search for answers for her own undiagnosed illness, and the film she's created to shine a light on undiagnosed illnesses called "Undiagnosed."Listen Now
A short and sweet episode filled with ideas to simplify the holidays and keep the "merry" in this merry time of year. From me to you, Happy Holidays Rare Mamas! Listen Now
With tips and tools to make meals simple and nourishing, Dietitian Nutritionist Chardell Buchanan is helping rare mamas like us take good care of our own health!Listen Now
Patti M. Hall gives a peek into the story behind her rare disease memoir, Loving Large and explores the power of storytelling to grow community.Listen Now
Marisa Penrod shares her journey raising her son with Duchenne muscular dystrophy and provides insights on starting a nonprofit organization as well as how to work with existing organizations.Listen Now
In honor of SMA Awareness month, SMA mom Mary McHale shares insights from her 20+ years as a rare mom, including how to advocate and raise awareness for your child's rare disease. Listen Now
Effie Parks shares her story and offers up advice and tips on how to tackle common challenges that rare disease parents face including self-care, isolation, financial challenges and more. Listen Now
Rachel offers up how she navigated an ultra-rare diagnosis, ways to work with researchers, tips for collaborating with special education administrators, and how she’s learned to focus on best-case scenarios. Listen Now
Colleen shares valuable insights from her perspective as both a medical professional and a mother of a child with a rare diagnosis. This episode is powerful!Listen Now
In honor of Mother's Day, Nikki and her mom Myrna, talk all things motherhood. Myrna offers the valuable motherhood lessons she's learned through the years.Listen Now
Stacey Walthers Naffah shares the knowledge she's gained fighting for her daughter with a rare cancer, and how they found their sunshine in the storm. Listen Now
