Shows
Confessions of a Rare Disease MamaLife Lately: A Rare Mama Catch-UpSend us a textIn this solo stream-of-consciousness episode, I’m catching you up on everything happening in our world lately—from the latest updates on Roman and Stella’s treatment journey, to exciting news about my book Soaring Together, to some personal reflections on life, advocacy, and motherhood.You'll hear about where we are with the investigational brain medication, some hopeful signs we've been seeing, our upcoming family trips, and a big (and bittersweet) decision we’re considering for next year: sending the kids to an in-person school for children with disabilities. I’m sharing al...2025-04-2332 minConfessions of a Rare Disease MamaNavigating Resources and Grants with Advocacy AbbySend 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...2025-03-0558 minConfessions of a Rare Disease MamaReal Food Blended Diets Made Simple: A Conversation with Registered Dietitian Hilarie GeurinkSend 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...2025-01-291h 02Confessions of a Rare Disease MamaA Mother’s Legacy: Lauren Williams’ Commitment to GRIN1 Families in Honor of Her SonSend 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...2025-01-1753 minConfessions of a Rare Disease MamaGoals for 2025, Tackling Winter Blues, and SNOWMAGEDDONSend 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. T...2025-01-0723 minConfessions of a Rare Disease MamaA Rare Mama’s Reflections on the Holiday Season with Yours TrulySend 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 wh...2024-12-2233 minConfessions of a Rare Disease MamaTurning Pain into Purpose: Rare Mama, Ashley Haywood’s Advocacy for Sanfilippo SyndromeSend us a textIn this deeply personal episode of Confessions of a Rare Disease Mama, I sit down with Ashley Haywood, a devoted mother and passionate advocate for her 8-year-old daughter, Sadie, who is living with Sanfilippo syndrome. Often referred to as "childhood Alzheimer’s," Sanfilippo syndrome is a rare and progressive genetic condition that profoundly impacts children and their families.Together, Ashley and I explore how our children's life-changing diagnoses reshaped our lives in ways we never expected. We reflect on our shared experience of initially retreating from our communities after receiving devastating ne...2024-12-031h 06Confessions of a Rare Disease MamaSpecial Family Transitions with Special Needs Divorce Coach, Mary Ann HughesSend us a textIn this episode of Confessions of a Rare Disease Mama, we dive into the complexities of family transitions with Mary Ann Hughes, a certified Special Needs Divorce Coach. Mary Ann took her own experience of navigating divorce after 21 years of marriage, and raising two children on the autism spectrum, into a mission to help others. Mary Ann shares her invaluable insights and compassionate guidance on navigating divorce and separation when a child has profound medical and/or behavioral needs. We discuss the unique challenges these families face, from planning for financial security to...2024-11-0540 minConfessions of a Rare Disease MamaMini Ep: My EXCITING, BIG Announcement!Send us a textTune in to this mini episode to learn what my exciting, big announcement is! It's a very special project I've been quietly working on for years & cannot wait to share it with you all!Donate to Hurricane Helene recovery efforts in NC hereDonate to Hurricane Helene recovery efforts in FL hereResources & Links for this episode: Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop Learn more about our brave warriors...2024-10-0116 minConfessions of a Rare Disease MamaThe Eight Different Types of Advocacy with Director of Community Engagement of Global Genes, Daniel DeFabioSend us a textIn this episode I welcome back (for a repeat appearance!) Director of Community Engagement of Global Genes, Mr. Daniel DeFabio. During our conversation, we dive deep into the many facets of advocacy that we, as rare parents and caregivers deal with. Daniel shares his vast knowledge and experience in the rare disease community and together we break down the eight different types of advocacy that every rare disease parent/caregiver or patient can engage in.From policy advocacy to school support, Daniel explains how each form of advocacy plays...2024-09-1758 minConfessions of a Rare Disease MamaOfficially entering my self love eraSend us a textEnjoy this solo catch-up episode! Some things I bring up during this episode:-Our kid's starting school (homebound vs. in person)-Roman's upcoming SIXTH birthday & fundraiser-Dealing with ignorant comments online-What quality of life means to me and my children-Upcoming weekend trip I have planned (without the hubby and kids)!-How it felt turning 36 this summer and officially entering my SELF LOVE eraListen to my episode on the Rarely Normal PodcastListen to my story episode on the Rare Life 2024-09-0328 min
Always Looking UpTiffany Yu On Creating A Must-Have CommunityIn this week’s episode I sat down with Tiffany Yu. Tiffany is the CEO & Founder of Diversability, an award-winning social enterprise to elevate disability pride, the Founder of the Awesome Foundation Disability Chapter, and the author of The Anti-Ableist Manifesto: Smashing Stereotypes, Forging Change, and Building a Disability-Inclusive World. We discuss the creation and evolution of Diversability, the work that happens in community and solidarity, being an amplifier of other disabled voices and much, much more. Follow Tiffany: Instagram: @imtiffanyyu Twitter: @ImTiffanyYu LinkedIn: Tiffany A. Yu, MSc TikTok: @imtiffanyyu Website: https://www.tiffanyyu.com Buy...2024-08-2654 minConfessions of a Rare Disease MamaPrioritizing your mental health as a caregiver with Founder and Executive Director of We Are Brave Together, Jessica PataySend us a textI am back this week with a lovely conversation with the wonderful Jessica Patay, Founder & Executive Director of the non profit We Are Brave Together. In this episode we talk about the importance of respite as a caregiver, her experience as a mother and caregiver to her son, Ryan, who is living with Prader-Willi syndrome, how her non profit came to be, as well as the new anthology they recently released called "Becoming Brave Together," along with so much more. Happy listening, friends!Buy Becoming Brave Together on amazonLearn m...2024-08-2058 minConfessions of a Rare Disease MamaOur MAW Disney trip recap with special guest (& my better half), Don ArnoldSend us a textFor our very belated Father's Day episode I have my favorite baby daddy & life partner on, Donald to recap our incredible week at Disney for Stella's Make-A-Wish trip. We talk about some of our favorite things we did there and share some tips to other medical parents who are considering a MAGICAL trip to Disney. Happy Listening, friends!Feeling overwhelmed by the challenges of raising a medically complex child? Join me at the upcoming Powerful Medical Parenting Summit! We will explore strategies, resources, and support to help you tackle isolation...2024-07-0141 minConfessions of a Rare Disease MamaMini solo episode: If I could go back in timeSend us a textWith the passing of Memorial Day weekend, we get to another anniversary of our D-Day. 5 years since our entire lives were flipped upside down. Join me during this mini solo episode as I share some things I wish I could go back and tell myself at the time of Roman's diagnosis, knowing what I know five years in.Resources & Links for this episode: Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop Learn more...2024-06-0417 minConfessions of a Rare Disease MamaMission: Inclusion with Speech Language Pathologist & inclusive children's book author, Megan CraftSend us a textWelcome to the podcast, Megan Craft! Megan is a Speech Language Pathologist, wife and mother of two, who saw an unmet need in the community when she kept hearing from parents of her patients that their children were not represented in books. She felt called to do something about it, so she started her children's disability inclusive book series called Mission: Inclusion. Through her series she is working towards expanding diversity of book characters to include children with varying types of disabilities. She draws inspiration for her characters from all the children/adults...2024-05-2147 minConfessions of a Rare Disease MamaHow to get through a long hospital stay & my inpatient must-havesSend us a textIn honor of Roman being home for one whole year from our terrifying 2 month PICU stay, I decided to compile a list of all my must-haves while I am inpatient with my child. I also share other tips for holding onto your sanity while you are in the midst of a long and unexpected hospital stay with your child. Happy listening, yall! Shop all my inpatient must-haves below:https://www.amazon.com/shop/confessionsofararediseasemama/list/35OEIGSFEA1H4?ref_=aipsflist_aipsfconfessionsofararediseasemamaResources & Links for this episode:...2024-05-0740 minConfessions of a Rare Disease MamaAll things TRAVEL with Accessible Adventures Founder, Kristy CookSend us a textI hope ya'll have a pen and paper to write down ALL the amazing travel tips this week's guest shares with us! Kristy Cook is a mother of four (one who is diagnosed with a rare form of Epilepsy) & the founder of Accessible Adventures. She believes that nature is meant for EVERYONE and is very passionate about accessible travel. This week she shares more about her family, how they got started in all their accessible adventures, and shares so many travel tips for families of medically complex children. Happy listening, friends! 2024-04-161h 22Confessions of a Rare Disease MamaMy inner debate on a third child and what I have come to realizeSend us a textThere are SO many complex emotions that come along with the question of potentially having more kids- ESPECIALLY if you have one (or in my case, two) that have severe medical needs. There are many pros and cons to weigh and it's something that has been weighing heavy on my heart lately as my husband and I (and our kids) get older. Join me for a good old fashioned solo episode this week as I share my internal struggle with this and what I have come to realize lately. 2024-04-0321 minConfessions of a Rare Disease MamaTalking about all the things with The Rare Life's Madeline CheneySend us a textThis week I sit down with founder and host of The Rare Life, Madeline Cheney. She started her podcast in 2020, but the seed was planted 3 years prior—when doctors found troubling results at her 20-week ultrasound that pointed to a rare syndrome during her pregnancy with her second child. She and her husband Juston have two beautiful children, their 7-year-old daughter Wendy, and their now 5-year-old son Kimball. I have been a long time fan of the Rare Life, so I was so excited to talk with Madeline and learn more about her an...2024-03-261h 22Confessions of a Rare Disease MamaTurning grief and trauma into growth and healing with Past Life Regression Therapist, Alena GourleySend us a textThis week I sit down with the beautiful, wise and talented, Alena Kupchella Gourley. Alena is a Licensed Social Worker, Clinical Hypnotherapist, psychic, medium and spiritual guide, who specializes in hypnotic healing and past life regression. Alena works with her clients to heal current or past relationship issues, physical, mental or emotional traumas or pain, such as phobias, anxieties, addictions, depression and anxiety, improving sports performance, stress management, weight loss and a positive body and food relationship. Self-Love, Self-Acceptance and Self-Forgiveness is the driving force behind her work. After Roman's diagnosis, I...2023-12-261h 00Confessions of a Rare Disease MamaCatchup/ dealing with the holiday bluesSend us a textIt's been a whirlwind month, so I'm catching you all up on what's been going on with us lately during this episode. I also touch on some of the inevitable feelings of jealousy I felt over the holiday and how I was able to move past them. Happy Listening, friends! Resources & Links for this episode: Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop Learn more about our brave warriors: saveromanandstella.com Support our family: GoFundMe Follow u...2023-12-0221 minConfessions of a Rare Disease MamaHow to fundraise like a BOSS with special guest and fellow rare mama, Brittany MarkhamSend us a textThis week I have my friend, Brittany Markham, on the podcast to chat all things fundraising! Guys, I am in awe of all that Brittany has been able to accomplish since her son Damian's ASMD diagnosis. She has raised over a million dollars toward research for treatments for ASMD. Over. One. Million. Dollars. As I'm sure you all know, the pressure us rare parents feel to raise money for our children's diagnosis' on top of ALL the other stresses that come along with raising a child living with a rare disease is no...2023-10-311h 22Confessions of a Rare Disease MamaLife UpdateSend us a textI'm officially a workin' woman again, guys. Okay, well let me clarify- a PAID working woman :)Join me in this episode as I give some life updates on what we've been up to and the feelings and emotions I have had as I made the decision to go back to work (super part time). Happy listening, friends!If you feel called to donate to help the innocent children who are being affected in the Gaza and Israel Emergency you can do so HERE.Donate to the International R...2023-10-2326 min
Get Hoptimized PodcastDesign Better Labels and Packaging - Guest Jillian Noble of Elbongürk DesignReally excited to chat Label and Package Design with a pro like Jillian. She's got a TON of experience and has done work for some great brands like Central Waters, Omni, and Lagersmith. Whether you are working with designers or doing design yourself, there is a lot to glean from this interview. Learn more about Jillian and her company, Elbongürk, at www.elbongurk.com ---For more information on Get Hoptimized, check out our website or follow us on social media.www.gethoptimized.com@gethoptimized 2023-10-0847 minConfessions of a Rare Disease MamaWhen the "FOMO" starts creeping in as a medical parentSend us a textHave you experienced FOMO as a special needs parent? Of course you have. We all have. In fact, for us, it's a daily struggle. There are SO many more things for us to consider when asked to do something: is it handicap accessible? Will it be too much stimulation and trigger more seizures? How many people will be there? Will they be exposed to too many germs? What if they get sick again and end up back in the hospital? Will there be somewhere where we can change them? This week...2023-10-0624 minConfessions of a Rare Disease MamaIs my child's diagnosis a "karmic wake up call" from the universe?Send us a textHas this thought ever crossed your mind as a parent with a life limiting illness or condition? You are not alone. I recently had a listener reach out to me and suggested this as an episode topic (thanks Sara!). She said she has struggled with the thought that somehow her son's terminal diagnosis was her "karmic wake up call" to be a better person and couldn't shake the feeling that maybe some poor choices she made in her 20's led her to this. Am I a believer in karma? Absolutely. HOWEVER, I definitely...2023-09-0324 min