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Jillian Arnold

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Confessions of a Rare Disease MamaConfessions 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 minConquering Your ClownfishConquering Your ClownfishParenting Through Rare Disease: A Masterclass in Perspective with Jillian ArnoldWhat if the most heartbreaking diagnosis became your life’s greatest teacher?In this powerful episode of Conquering Your Clown Fish, host Brady Murray sits down with Jillian Arnold—a mother, caregiver, and unapologetic warrior for the rare disease community. When her son Roman was diagnosed with ASMD, a rare and devastating genetic disorder, Jillian was already pregnant with her second child, Stella—who would later be diagnosed with the same condition.Instead of surrendering to grief, Jillian chose a radical path: one of relentless advocacy, deep community connection, and fierce joy. She challenges the idea t...2025-04-0235 minConfessions of a Rare Disease MamaConfessions 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 minWholly Surrender PodcastWholly Surrender PodcastSurrendering your EmotionsEver feel like your emotions are controlling you? It's a rough game, but we're throwing around a few things that we've learned about taking our emotions captive and we're sharing places that can get you started too. Dr. Jamie Arnold | Arnold Chiropractic www.arnoldchiroclinic.com Psalm 91 Ministries https://www.psalm91ministries.net/ Grab the magazine! https://whollysurrender.com/shop/magazine 2025-02-0328 minConfessions of a Rare Disease MamaConfessions 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 MamaConfessions 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 MamaConfessions 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 minMother Nature Will Kill YouMother Nature Will Kill YouEpisode 97 - Pour One Out For The Edmund FitzHaley and Jillian get ready for the holidays with a three story episode focusing on shipwrecks that occurred around or on Christmas. Haley talks about the swamp darter for conservation corner. Sources: The Christmas Tree Ship, Glenn Longacre, National Archives The Grim Fate of the Privateer "General Arnold, Patrick Browne, Historical Digression The Wreck of the Annie C Maguire at Portland Lighthouse on Christmas Eve, Allan Wood, New England Lighthouse Stories Swamp Darter (Etheostoma fusiforme), Maine.gov2024-12-231h 31Confessions of a Rare Disease MamaConfessions 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 minBusiness of Apps PodcastBusiness of Apps Podcast#223: “AI breakthroughs: revolutionizing mobile app marketing" App Promotion Summit San Francisco panelThe holiday season is practically around the corner. We can all hear The Jingle Bells singing and some nice gifts from Amazon are waiting underneath the Christmas Tree. Anyway, this week, we have yet another exclusive bonus episode for you, featuring the panel discussion from the App Promotion Summit San Francisco 2024. As you know, we organize the App Promotion Summit several times a year to bring together app marketing, growth, product, CRM, and revenue executives. These events feature panels where industry professionals share their experiences and insights on emerging trends that significantly impact the sector.2024-12-1640 minConfessions of a Rare Disease MamaConfessions 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 06Moms Like Me Podcast by SupportNowMoms Like Me Podcast by SupportNowNavigating Grief, Joy, and Resilience as a Medical Mama with Jillian ArnoldJoin us for an inspiring and heartfelt conversation with Jillian Arnold on the Support Now podcast. As a mom to two incredible children diagnosed with the ultra-rare condition ASMD (acid sphingomyelinase deficiency), Jillian shares her journey of navigating medical complexities, grief, and finding joy amidst the challenges. Learn how she found strength, built community, and continues to spread awareness through her advocacy, social media, and her new children’s book, Soaring Together. SupportNow.org is dedicated to empowering families facing medical challenges, and Jillian's story is a powerful testament to resilience and love.2024-11-2225 minThe Rare LifeThe Rare Life176: Season 10 Finale | A Spicy Season, Sticker Club Tallies, + What’s Coming Next w/ Alyssa NutileSeason 10 is coming to a close, and it’s been a good one! While a little shorter than seasons in the past, we covered some big topics from hospitalizations to crunchy medical parenting to online bullying with some amazing stories mixed in. Outside of the podcast, we added two new board members, and we had our most successful round of Sticker Club yet! So to celebrate the end of this season, per tradition, we’re sharing a little recap of the season, plus audio from three listeners as they describe which episodes touched them the most from Seas...2024-11-2130 minGood Not GreatGood Not GreatHeartbreak Feels Bad in a Place Like ThisWarning, this was recorded in the past, Tuesday night to be exact, before the republic fell. Anyway here we are trying to throw some levity into the ether. Jill needs to explain the Senate vs. House of Representatives to Ryann…again. Ryann has some questions on this Beyoncé Levi’s commercial. Jillian continues to be “the biggest non-advocate of hiking”. Ryann likes Rylee Arnold and Stephen Nedoroscik on Dancing with the Stars (also Stephen is 26, Rylee is 19; so he’s not 19, Ryann has more of a chance). Jennifer Lawrence is pregnant with her second child, congrats girl! What do we think of...2024-11-071h 00Confessions of a Rare Disease MamaConfessions 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 MamaConfessions 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 minWholly Surrender PodcastWholly Surrender PodcastEquipping Your KidsThis week we're taking a deep dive into equipping your kids. After chatting with moms and being in my own challenging moments, I realized that we underestimate the power of teaching our kids and equipping them to partner with us everyday. By paying attention to a few things and making a few pivotal adjustments, you might be surprised at the progress your household makes! Here's all the resources I mention in the episode and please reach out to me if you want more information! Shop House of Joppa! 2024-09-3043 minConfessions of a Rare Disease MamaConfessions 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 minWholly Surrender PodcastWholly Surrender PodcastSurprising Things You Didn't Know About Your Health with Dr. Jamie ArnoldIn this episode, we tackle all things nutrition. Dr. Jamie is a chiropractor and functional wellness practitioner who specializes in helping moms feel like themselves again by taking a holistic approach to health. We talk about the surprising thing most moms don't know about their health, simple steps to start supporting our bodies better, stewarding the whole being, and so much more! It's full of information you won't want to miss. CHECK OUT DR. JAMIE'S RESOURCES + HER EMAIL LIST recipes:  Recipes | Arnold Chiropractic (arnoldchiroclinic.com) website:  Goddard Chiropractor | Godd...2024-09-1653 minConfessions of a Rare Disease MamaConfessions 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 minThe Rare LifeThe Rare Life164: Jillian’s Story | Medical Mom x 2 and the Saying “Someone Always Has It Worse”Before we have children, most of us never envision what it would be like to raise a disabled child...and certainly not two of them with the same degenerative disease (Acid Sphingomyelinase Deficiency, ASMD for short, also sometimes called Niemann Pick Disease Type A/B). But this is the exact situation Jillian Arnold found herself in after the birth of her daughter, Stella. In this tender, raw episode, Jillian describes what it was like navigating a surprise pregnancy in the midst of receiving her son Roman’s diagnosis, the gut-wrenching news that her daughter had the same di...2024-08-2951 minConfessions of a Rare Disease MamaConfessions 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 minLife Without Secrets with Jillian RiddellLife Without Secrets with Jillian RiddellNavigating the Six Pillars of Health with Tessa ArnoldIn this powerful episode of Life Without Secrets, host Jillian delves deep into the importance of holistic wellness and self-connection with guest Tessa Arnold, co-founder of Snapback Energy and the Balance of You company. Tessa shares her personal journey of self-discovery, overcoming challenges, and developing self-love and compassion through the six pillars of health. Don't miss this enlightening episode filled with practical tips for incorporating holistic wellness into your daily routine and fostering a deeper connection with yourself and others.“Before we make that next decision, before we say the next words that we can't take back, yo...2024-08-0747 minRarely NormalRarely NormalEpisode 22: Jillian Arnold | ASMDWe're kicking off Season 2 with Jillian Arnold. It was an honor to have her in the studio sharing her love and life with her two incredible kids - Roman and Stella. Both have ASMD (Acid sphingomyelinase deficiency) and her story is definitely one to share! Her perspective on rare disease is so unique and powerful.2024-08-0651 minConfessions of a Rare Disease MamaConfessions 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 MamaConfessions 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 minCrime Stories with Nancy GraceCrime Stories with Nancy GraceKANSAS MOMS' BODIES STUFFED IN ICE CHEST, BURIED IN COW PASTURE, BLOODY CLOTHES, TASER, DUCT TAPENewly filed court documents reveal what investigators did to find the bodies of Veronica Butler and Jillian Kelley after they go missing en route to Butler's son's birthday party.  OSBI, the FBI, and the Texas County Sheriff’s Department follow cell phone pings to find a horrific scene, a 10-foot-deep hole, eight and a half miles from Butler's abandoned car, in a pasture on farmland leased by Tad Cullum.  Documents reveal investigators uncover a chest freezer, at the bottom of the hole. Once the freezer is open the search for Veronica Butler and Jillian Kelley ends...2024-05-2339 minConfessions of a Rare Disease MamaConfessions 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 MamaConfessions 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 minThe Rare LifeThe Rare Life157: Friendships with People Who Don’t Have Disabled Kids w/ Jillian ArnoldFriendship, especially with those who don’t have disabled children, gets more complicated once you’ve had your own child with disabilities. It’s not necessarily fair, but it doesn’t change the fact that we often end up interacting differently with friends we had before our children were born.In this episode of The Rare Life, I’m joined by Jillian Arnold, host of her own disability parent podcast and mom to Roman and Stella, who both have ASMD (a.k.a. Niemann Pick Disease Type A/B). We dig into all the aspects of befrien...2024-04-181h 12Confessions of a Rare Disease MamaConfessions 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 MamaConfessions 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 MamaConfessions 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 MamaConfessions 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 MamaConfessions 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 MamaConfessions 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 22