By Jillian Arnold
Join me every week as I navigate the ups and downs, and everything in between of the crazy stressful, but always beautiful life of being a rare disease parent.
... more
5
4141 ratings
The podcast currently has 53 episodes available.
Send us a text
In 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 a vital role in making an impact, whether you’re new to advocacy or a seasoned advocate looking to expand your influence. We explore how these various types empower families, patients, and communities to drive change at both a personal and systemic level.
Tune in to gain valuable insights on how you can take actionable steps in your advocacy journey, no matter where you are in your path, and learn more about the incredible work of Global Genes in uniting the global rare disease community.
Daniel's 8 Stages of Advocacy Article
Learn more about Daniel DeFabio
Register for Global Genes Patient Advocacy Summit
Learn how to tell your story
Beginners guide to rare disease
Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt!
Learn more about my children's fight with ASMD and donate to our cause
Follow us on instagram!
Send us a text
Enjoy 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 era
Listen to my episode on the Rarely Normal Podcast
Listen to my story episode on the Rare Life
Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt!
Learn more about my children's fight with ASMD and donate to our cause
Follow us on instagram!
Send us a text
I 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 amazon
Learn more about We Are Brave Together
Follow them on instagram
Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt!
Learn more about my children's fight with ASMD and donate to our cause
Follow us on instagram!
Send us a text
For 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, uncertainty, and exhaustion. The best part? Registration is FREE! Sign up today!
Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt!
Learn more about my children's fight with ASMD and donate to our cause
Follow us on instagram!
Send us a text
With 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.
Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt!
Learn more about my children's fight with ASMD and donate to our cause
Follow us on instagram!
Send us a text
Welcome 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 who she has previously worked with during her SLP career. The theme behind the character stories is to show young children that we are all different and that is what makes us important. It helps readers learn to accept and find commonality with peers to raise awareness and increase the inclusion of their peers in various environments.
Get a started in the Mission: Inclusion series HERE
Follow Mission:Inclusion on instagram @mission._.inclusion1622
Purchase Margo & You on amazon
Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt!
Learn more about my children's fight with ASMD and donate to our cause
Follow us on instagram!
Send us a text
In 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_aipsfconfessionsofararediseasemama
Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt!
Learn more about my children's fight with ASMD and donate to our cause
Follow us on instagram!
Send us a text
I 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!
Learn more about Kristy and her family's travel adventures:
https://accessibleadventures.net/index.html#/
Follow them on instagram: @accessible.adventures
Blog post for most accessible east coast beaches in US:
https://wonderswithinreach.com/2023/05/most-accessible-beaches/
$7 Track Chair Google Map:
https://accessibleadventures.net/product.html#/
Universal Changing Table map:
https://www.changingspacescampaign.com/
Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt!
Learn more about my children's fight with ASMD and donate to our cause
Follow us on instagram!
Send us a text
There 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.
Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt!
Learn more about my children's fight with ASMD and donate to our cause
Follow us on instagram!
Send us a text
This 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 and her family's unique journey. We talk about ALL the things including what is was like during her pregnancy knowing her son had a rare condition, our not so great first encounters with Palliative Care, the family dynamics between a disabled and non disabled siblings, family planning/IVF, and so much more. We also touch on a few of my favorite episodes of The Rare Life which are linked below for you all to check out! Happy listening, ya'll!
https://therarelife.org/
https://www.instagram.com/the_rare_life/?hl=en
https://www.facebook.com/p/The-Rare-Life-Podcast-100039719031110/
Episode 130: Fearful of Child Loss/Anticipatory Grief
Ep. 95: The Parable of the Pain Scale
Ep. 99: Family Planning When You Have a Medically-Complex Child w/ Amanda Griffith-Atkins
Ep. 19: The Story of Claire
Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt!
Learn more about my children's fight with ASMD and donate to our cause
Follow us on instagram!
The podcast currently has 53 episodes available.
43,877 Listeners
110,398 Listeners
267 Listeners
133 Listeners