Confessions of a Rare Disease Mama

• Navigating Resources and Grants with Advocacy Abby

  Send us a textFinding financial support and resources as a rare disease parent can feel overwhelming—but what if there was a platform designed to make it easier? In this episode of Confessions of a Rare Disease Mama, I sit down with Abby Zachritz, also known as Advocacy Abby, to talk about the incredible tool she’s created in partnership with SupportNow to connect families with grants and resources tailored to their child’s diagnosis and location.Abby shares how her own experiences as a mother and caregiver to her disabled son led her to build this platform, the impact it’s having on families, and practical advice for caregivers looking for financial support. If you’ve ever struggled to navigate the world of grants and assistance programs, this episode is for you!In This Episode, We Discuss:✨ How Abby became "Advocacy Abby" and what inspired her platform✨ The challenges families face in accessing financial assistance✨ How her platform works to match families with available grants✨ Tips for advocating for financial support and navigating the system✨ Why caregivers need more access to resources—and how to find themConnect with Abby & Explore Her Platform:📲 https://www.advocacyabby.com/📲 Follow Abby on social media: @AdvocacyAbby📲 Explore grants through CONNECT 📲Explore SupportNow📲Book a consultation with Abby hereListen to my episode with Alena Gourley hereCheck out Alena's new book Blessed By Death on amazon.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 Lotionor use code CONFESSIONS at checkout...

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• Real Food Blended Diets Made Simple: A Conversation with Registered Dietitian Hilarie Geurink

  Send us a textIn 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 she’s worked with.Whether you’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: @blendedtubefeedingGet 25% off monthly membership to her online community and resource group, Blended Tube Feeding Made Simple: HEREAdditional 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 Lotionor use code CONFESSIONS at checkout...

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• A Mother’s Legacy: Lauren Williams’ Commitment to GRIN1 Families in Honor of Her Son

  Send us a textIn 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 lossConnect with the CUREGRIN Foundation:Website: https://curegrin.org/Social Media: @curegrin_foundationConnect with Lauren:On facebook: https://www.facebook.com/laurenrochellewilliams/Through email: [email protected] 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 Lotionor use code CONFESSIONS at checkout...

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• Goals for 2025, Tackling Winter Blues, and SNOWMAGEDDON

  Send us a textAs 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 Lotionor use code CONFESSIONS at checkoutJoin 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 Lotionor use code CONFESSIONS at checkout...

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• A Rare Mama’s Reflections on the Holiday Season with Yours Truly

  Send us a textIn this solo stream of consciousness episode, I reflect on the unique challenges and joys that the holiday season brings for families navigating rare diseases and medical complexities. I share practical tips for managing expectations, creating meaningful traditions, and finding joy in the small moments. I'm here to offer encouragement for parents feeling the weight of the season, reminding them that connection and presence matter far more than perfection. Whether you’re scaling back traditions or adapting them entirely, this episode is a gentle reminder that the holidays can still hold magic, even when they look different. Join the Conversation:Have thoughts about today’s episode? Share your holiday tips, reflections, or just drop a note to connect! Send me a message or tag me on social media with your thoughts. Let’s navigate this season together, one moment at a time.Don’t Forget:If you enjoyed this episode, please take a moment to subscribe, leave a review, and share it with another parent who might need a little holiday encouragement. Your support means the world and helps us reach more families who need it most.Listen to the TOP 3 episodes of 2024:1. My Inner Debate on a Third Child and What I Have Come to Realize2. Mini Ep: My EXCITING, BIG Announcement!3. Talking About All the Things with The Rare Life's Madeline Cheney Looking forward to seeing you all back here in 2025!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 Lotionor use code CONFESSIONS at checkout...

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