Libsyn Directory

Finding Meaning and Purpose with STXBP1 Foundation Director of Development and Rare Mama Melissa Hioco

Release Date: 12/07/2022

Rare Mamas Rising

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...

Adapting Halloween Traditions

Rare Mamas Rising

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...

Loving With Every Breath with Breath Taking Author Jessica Fein

Rare Mamas Rising

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...

Preparing for a Planned Hospital Stay

Rare Mamas Rising

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...

Blazing Trails to Cure and Care with The Charlotte and Gwenyth Gray Foundation to Cure Batten Disease with Founder Kristen Gray

Rare Mamas Rising

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...

Mother’s Day Episode: On Bonding and Being There

Rare Mamas Rising

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...

Paying It Forward with TSC Alliance Director of Community Support and Outreach Shelly Meitzler

Rare Mamas Rising

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...

Transforming Love Into Advocacy

Rare Mamas Rising

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 CONNECT WITH NIKKI

Charting the Unknown - Navigating the New Year Amid Uncertainty

Rare Mamas Rising

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...

Navigating Grief and Healing with Normal Broken Author Kelly Cervantes

Rare Mamas Rising

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...

More Episodes

RARE MAMAS RISING- EPISODE 22

Finding Meaning & Purpose with STXBP1 Foundation Director of Development & Rare Mama Melissa Hioco

After discovering her son Alex had STXBP1, a rare neuro-developmental disorder, and finding there was little information known about the disorder, Melissa Hioco found an online STXBP1 parent community and got involved. Today, she is a founding member and the Director of Development for the STXBP1 Foundation, a parent-led nonprofit leading the charge for a cure for STXBP1 disorders. Within this new world, through the pain and struggle, she has realized her purpose and has evolved into an unrelenting advocate for the STXBP1 community, supporting her fellow rare disease mamas and often turning to her faith for strength and inspiration. In this episode, 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.

EPISODE HIGHLIGHTS