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In this episode of Confessions of a Rare Disease Mama, I'm joined by Hilarie Geurink, a registered dietitian with a passion for empowering families to explore real food blended diets for their loved ones. Hilarie specializes in creating personalized nutrition plans that incorporate whole foods, providing an alternative to traditional formula-based tube feeding.

We discuss the benefits of blended diets, practical and easy tips for getting started, and how they can positively impact the health and quality of life for children and adults with feeding tubes. Hilarie shares her wealth of knowledge and practical advice, along with some inspiring success stories from the families sheâ s worked with.

Whether youâ re already using a blended diet or are curious about making the switch, this episode is packed with valuable insights and encouragement for caregivers navigating this journey.

Key Topics Covered:

• What is a real food blended diet?
• The health benefits and challenges of switching to whole foods for tube feeding.
• Strategies for preparing and balancing a nutritious blended diet at home.
• Resources and tools to support families interested in blended diets.

Tune in for an enlightening and encouraging conversation that sheds light on the power of real food!

Connect with Hilarie:

• Instagram: @blendedtubefeeding
• Get 25% off monthly membership to her online community and resource group, Blended Tube Feeding Made Simple: HERE
  
  

Additional Resources:

• Article on blenders and discount programs: https://blendedtubefeeding.com/the-best-blenders-for-tube-feeding-with-discounts/
• Article on commercial real food formulas: https://blendedtubefeeding.com/real-food-tube-feeding-formulas-a-dietitians-review/

Join the Conversation:

Follow Confessions of a Rare Disease Mama on Instagram, TikTok, and Facebook. Share your thoughts on this episode and connect with our community. Be sure to follow us on social media and subscribe on our website for more episodes that bring you stories and insights from those who truly understand the rare disease journey.

Purchase my new inclusive children's book Soaring Together now available on Amazon and at Barnes and Noble

Get your FREE Positive Affirmations for the Medical Parent PDF here!

Buy your "Embracing the Rare" T-shirt & other merch!

Learn more about my children's fight with ASMD and donate to our cause

10% OFF 8Sheep Organics Junior Bedtime Lotion
or use code CONFESSIONS at checkout...

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In this moving episode of Confessions of a Rare Disease Mama, I sit down with Lauren Williams, a rare disease advocate and one of the driving forces behind the CureGRIN Foundation. Lauren shares her journey as a mother to a son who bravely fought against GRIN1, a rare genetic condition, and the heartbreak she has and continues to endure from his passing just over a year ago.

Lauren opens up about how she made the decision to continue to advocate after her son's passing, dedicating her life to supporting other families navigating GRIN1 diagnoses. We discuss the importance of community, the challenges of advocating for rare diseases, and the legacy of love and resilience that her son has inspired.

Trigger Warning: Child loss

Connect with the CUREGRIN Foundation:

• Website: https://curegrin.org/
• Social Media: @curegrin_foundation

Connect with Lauren:

• On facebook: https://www.facebook.com/laurenrochellewilliams/
• Through email: Lauren@curegrin.org
• Join her virtual support group (Unbreakable Bonds) for bereaved parents of medically complex children: https://www.facebook.com/share/g/15XzQPCNTz/

Thank you for listening and holding space for this important discussion.

Join the Conversation:

Follow Confessions of a Rare Disease Mama on Instagram, TikTok, and Facebook. Share your thoughts on this episode and connect with our community. Be sure to follow us on social media and subscribe on our website for more episodes that bring you stories and insights from those who truly understand the rare disease journey.

Purchase my new inclusive children's book Soaring Together now available on Amazon and at Barnes and Noble

Get your FREE Positive Affirmations for the Medical Parent PDF here!

Buy your "Embracing the Rare" T-shirt & other merch!

Learn more about my children's fight with ASMD and donate to our cause

10% OFF 8Sheep Organics Junior Bedtime Lotion
or use code CONFESSIONS at checkout...

Send us a text

As the new year begins, I’m sharing some personal changes I hope to put into practice in 2025. From doing more gratitude journaling to developing better sleep habits & less doom-scrolling before bed, I’m diving into the shifts in routine I want to cultivate this year.

I’m also opening up about how the winter months affect me (especially once the holidays are over) and the intentional ways I’m working to combat the seasonal blues. If you’re someone who feels the weight of the colder, darker days, this one’s for you. Together, let’s continue to find ways to nurture hope and light as we move forward into a new year.

10% OFF 8Sheep Organics Junior Bedtime Lotion
or use code CONFESSIONS at checkout

Join the Conversation:

Follow Confessions of a Rare Disease Mama on Instagram, TikTok, and Facebook. Share your thoughts on this episode and connect with our community. Be sure to follow us on social media and subscribe on our website for more episodes that bring you stories and insights from those who truly understand the rare disease journey.

Purchase my new inclusive children's book Soaring Together now available on Amazon and at Barnes and Noble

Get your FREE Positive Affirmations for the Medical Parent PDF here!

Buy your "Embracing the Rare" T-shirt & other merch!

Learn more about my children's fight with ASMD and donate to our cause

10% OFF 8Sheep Organics Junior Bedtime Lotion
or use code CONFESSIONS at checkout...