Dr Keri-Lyn Kozul | Research in Rare Disease
When Autumn Comes: Seasons of Hope for Medical + Disability Moms
Release Date: 06/04/2025
4 AM Goat Musings
When Autumn Comes: Seasons of Hope for Medical + Disability Moms
4AM: Goat Musings Goats are cute, don’t you want one??? Links and resources: Follow Suz: Follow Katrina: Join the conversation: Follow us on Facebook: Follow us on Instagram: Make sure you hit SUBSCRIBE so you don’t miss out on our upcoming stories of medical and special needs parenting from families like yours. And, if you enjoyed this episode, please leave us a rating and a review. Thanks!
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Jenn | Navigating Self Harm
When Autumn Comes: Seasons of Hope for Medical + Disability Moms
We’ve talked before about the feelings we experience when we receive a diagnosis for our child. We’ve talked about the realities of appointments, struggles with school, daily life. What happens when our children get older and puberty happens. What happens when their typical behaviors begin to change? Jenn shares with us her experience with her son, Everett. She openly shares the reality of living with a child who develops behaviors that harm himself. The girls discuss therapies, and fears related to these behaviors. “For something that takes a kid three times to...
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4 AM Do you Wear Undies?
When Autumn Comes: Seasons of Hope for Medical + Disability Moms
What’s going on down there? You might not want to know… Links and resources: Follow Suz: Follow Katrina: Join the conversation: Follow us on Facebook: Follow us on Instagram: Make sure you hit SUBSCRIBE so you don’t miss out on our upcoming stories of medical and special needs parenting from families like yours. And, if you enjoyed this episode, please leave us a rating and a review. Thanks!
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Virtual Pink House | Setting Sights on the New Year
When Autumn Comes: Seasons of Hope for Medical + Disability Moms
By the time this episode airs, we are pretty well into the new year. How are your resolutions going? Did you make any resolutions? Did you break any resolutions? Remember the list we made last year of monthly goals? Does anyone know where their list is? Let’s get real, we can’t find ours. But we do have some thoughts on starting a new year. Join the girls today as they chat about setting intentions for 2026, finding magic, and being just as prepared for vacation as they are for illness. “That’s not what we were going to talk about today.” -Suz Here’s what...
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4 AM | Hamster Trauma
When Autumn Comes: Seasons of Hope for Medical + Disability Moms
Who here had a hamster growing up? We all know that left you with some kind of trauma. Buckle up for this one… Links and resources: Follow Suz: Follow Katrina: Join the conversation: Follow us on Facebook: Follow us on Instagram: Make sure you hit SUBSCRIBE so you don’t miss out on our upcoming stories of medical and special needs parenting from families like yours. And, if you enjoyed this episode, please leave us a rating and a review. Thanks!
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Spread the Cheer | When Medical Complexity Doesn't Take a Holiday Break
When Autumn Comes: Seasons of Hope for Medical + Disability Moms
Christmas is the most magical time of the year. Well…is it? Is it really the most stressful time of the year? The stress is real for families of typical children, but add in medical complexity and we have a whole different ball of wax. Between parties and shopping and holiday performances, where do we also find time to breathe? Is it ok to say ‘no’ to these once a year activities? What happens when our kid just needs a break? How do we enjoy the holidays with the flu lurking around every corner? Suz and Katrina sit down today to discuss all of these things. We also get to hear how...
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4 AM True Crime
When Autumn Comes: Seasons of Hope for Medical + Disability Moms
Once upon a time, Katrina was the star of her very own True Crime Episode. You get to hear some of the details today! Links and resources: Follow Suz: Follow Katrina: Join the conversation: Follow us on Facebook: Follow us on Instagram: Make sure you hit SUBSCRIBE so you don’t miss out on our upcoming stories of medical and special needs parenting from families like yours. And, if you enjoyed this episode, please leave us a rating and a review? Thanks!
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Jen | First Place
When Autumn Comes: Seasons of Hope for Medical + Disability Moms
A mother’s job is never done. Well, that’s what people say…And it is so true. 24 hours a day, 7 days a week, 356 days a year, we are on call, if not actually hands on. Maybe in some of that time we are asleep. Maybe we are showering. Through it all, though, our priority is our child. We will never not respond. But when do we get to be first place? When are we the priority? Today, we are joined again by our friend Jen Lansink from “." Together, the girls talk about the struggle of always finding yourself in second, third, fifteenth place. They also offer a bit of advice for...
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4 AM Dead Fish
When Autumn Comes: Seasons of Hope for Medical + Disability Moms
What does it mean when dead fish rain down on your driveway? Well, fish singular…one fish. Links and resources: Follow Suz: Follow Katrina: Join the conversation: Follow us on Facebook: Follow us on Instagram: Make sure you hit SUBSCRIBE so you don’t miss out on our upcoming stories of medical and special needs parenting from families like yours. And, if you enjoyed this episode, please leave us a rating and a review? Thanks!
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Amanda Griffith Atkins | Caring for Yourself
When Autumn Comes: Seasons of Hope for Medical + Disability Moms
Today, Amanda joins us on the comfy couches of the pink beach house. Amanda Griffith-Atkins is a licensed marriage and family therapist, speaker, author, and guest lecturer. She is famous in the medical motherhood community for giving a voice to the lived experience that is caregiving. Guys, Suz fangirl’d hard on this one. Amanda came to the Apricity Hope House to share her book, How to Handle More Than You Can Handle, with us. Just because you weren’t there, doesn't mean you can’t still read the book. In the mean time, tune in to this episode for some excellent truths and advice....
info_outlineAny parent of a child with a rare disease hopes for a cure, a treatment, anything to improve their child’s quality of life. We often hear about new developments in medicine for more common illnesses, but are our young zebras forgotten? Is someone doing something to help? Today, Susan gets to speak with Dr Keri-Lyn Kozul, one of the researchers studying the Benji and Lorelei’s specific disease. Parents, we hope this episode gives you hope, that there are people working on this, good people who truly care.
Dr Keri-Lyn Kozul works in the Niemi Lab at Wash U in St Louis, Missouri. During her PhD, Dr Kozul was one of the first scientists to define the mechanisms of FBXL 4 disease in 2023. We are sure that you can tell from this episode, Dr Kozul’s focus and passion is to help children like Lorelei and Benji, and help find answers for families with FBXL 4 disease.
“Three years ago, we wouldn’t even be able to think about these things.” -Dr Kozul
Here’s what you don’t want to miss:
- Life in the lab
- Baking
- Support for families
- Treatment
- Call to action
Vote for Dr Kozul!:UMDF Accelerators
Contact Dr Kozul at kozul@wustl.edu if you have questions about this research.
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