Libsyn Directory

Driving Discoveries with Principal Investigator at Seattle Children’s Research Institute and Assistant Professor Department of Pediatrics, Division of Genetic Medicine at the University of Washington and Rare Mama Kim Aldinger

Rare Mamas Rising

Release Date: 04/26/2023

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...

A Rare Adoption Story with Rare Mama Monica Poynter

Rare Mamas Rising

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...

10 Minutes with Rare Mama Teri Furey - Larsen Syndrome Mom

Rare Mamas Rising

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...

Demystifying Differences with Author, Speaker, and Rare Mama Megan DeJarnett

Rare Mamas Rising

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...

Back-to-School Tips with Rare Mama Nikki McIntosh

Rare Mamas Rising

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....

Mid-Year Reset with Rare Mama Nikki McIntosh

Rare Mamas Rising

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

More Episodes

RARE MAMAS RISING- EPISODE 26

Driving Discoveries with Principal Investigator at the Center for Integrative Brain Research at Seattle Children’s Research Institute, Assistant Professor in the Department of Pediatrics, Division of Genetic Medicine at the University of Washington & Rare Mama Dr. Kim Aldinger

Dr. Aldinger is a Principal Investigator in the Center for Integrative Brain Research at Seattle Children’s Research Institute and an Assistant Professor in the Department of Pediatrics, Division of Genetic Medicine at The University of Washington. She received a BA in biology from Brandeis University, an ALM in psychology from Harvard University, and a Ph.D. in neurobiology from The University of Chicago. Dr. Aldinger has over 20 years of research experience applying neuroscience and genomics techniques to understand the impact of genetic changes on the development of brain structures and functions relevant to neurodevelopmental disorders. She is also the mom of twins Chloe and Grayson. Grayson has a rare genetic disease called MAST4. Dr. Aldinger understands the impact of a rare disease from both a professional, scientific perspective and a personal parent viewpoint. Her deep roots in research, coupled with her passion to contribute to the rare disease community, make her one to watch as she helps drive discoveries!

EPISODE HIGHLIGHTS

Dr. Aldinger’s path to becoming a brain researcher
The work Dr. Aldinger does as a Professor of Genetic Medicine and as a Principal Investigator
Grayson’s diagnostic journey and MAST4 diagnosis
How Dr. Aldinger co-founded the MAST Genes Research Foundation and the work she’s doing on MAST genetic mutations
How being a mom to a child with a rare condition informs Dr. Aldinger’s work
Advice for rare parents on how to approach research
Dr. Aldinger’s best learnings for fellow rare mamas