CDKL5 in Color

By Marissa Bishop

On the CDKL5 in Color podcast you'll hear co-hosts Marissa & Amanda share lessons learned along the way as parent caregivers to children living with CDKL5 Deficiency Disorder, a rare developmental... more

· Society & Culture

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FAQs about CDKL5 in Color:

How many episodes does CDKL5 in Color have?

The podcast currently has 23 episodes available.

CDKL5 in Color episodes:

March 28, 2025Episode 12: Hey! How Are We Doing??
In this latest episode, we reflect on how it’s been going for us at the CDKL5 in Color podcast and what people can expect in our upcoming (first!) newsletter! We are just so touched and proud of the response we’ve had from our CDKL5 community. Be sure to sign up for our newsletter so you get all the info right to your inbox! Sign up here: https://www.cdkl5incolor.com/newsletter-sign-up
SHOW NOTES
Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com
Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!
Email us to be on the show! [email protected]
MENTIONED IN THE EPISODE:
Read our first newsletter!! https://preview.mailerlite.io/preview/1263075/emails/142798938795149116
Please follow us on social media and let us know what you want to hear on the show!!
...more
17min
March 14, 2025Episode 11: Heather's Life with Ezra (age 3)
Episode 11: Heather’s Life with Ezra (age 3)
If you are in the early years of parenthood, you can probably relate to Heather. Mom of two littles, one with CDKL5, plus she and her husband are working full-time - life is busy! Ezra lives life in a big way and distinguishing what is CDKL5-related behavior vs typical toddler behavior is complicated for her parents. In this episode you’ll explore Ezra’s challenges with CDKL5 (spoiler, right now it’s not seizures!), her sibling relationship, and the impact special needs parenting has on career, marriage, lifestyle, and more.
“Your child sets the tone. Never give up on your child!” - Heather
SHOW NOTES
Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com
Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!
Email us to be on the show! [email protected]
MENTIONED IN THE EPISODE:

CDKL5 Sibling Book - message Toasting Tanner

Seizure Action Plan

Cortical Visual Impairment (CVI)

Montessori Bed

ARK chewies
...more
36min
March 07, 2025Episode 10: Let's Talk About Being Hospitalized
No one likes being in the hospital, but when your child has a diagnosis of CDKL5 Deficiency Disorder, hospitalizations are a part of life. Some of the most challenging hospitalizations are for respiratory illness. Recently, Marissa was in the hospital for two weeks with her son for the flu. In this episode, hear all about their stay as well as about how we prepare for hospital stays, tips and tricks, a candid discussion about the challenges, and how sometimes life looks different upon discharge.
SHOW NOTES
Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com
Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!
Email us to be on the show! [email protected]
MENTIONED IN THE EPISODE:
PICU
Common Respiratory Illnesses
Pediatric Intubation Video
Secretions and Suctioning Information
RESOURCES:
A Tiger Mom’s Guide for Sudden Hospitalization
How to Pack a Caregiver Ready Bag
...more
39min
February 21, 2025Episode 9: Stephanie's Life with Isobel (age 7)
Adaptability is the name of the game when you are a parent caregiver to someone living with CDKL5 Deficiency Disorder, especially when you are juggling a professional career.
In this episode we welcome Stephanie, geoscientist, educator, and medical mama to her daughter Isobel. We talk about how caregiving duties and medical needs not only impact employment, but in Stephanie’s case, changed the trajectory of her career.
If you are a working caregiver, you’ll relate to Stephanie’s story for sure. And if you’re not a caregiver, perhaps your eyes will be opened to the challenges your colleagues may be facing behind closed doors.
According to the Family Caregiver Alliance:

69% of working caregivers report having to rearrange their work schedule, decrease their hours, or take unpaid leave in order to meet their caregiving responsibilities.

39% of caregivers leave their job to have more time to care for a loved one.
Thanks for joining us, Steph!

SHOW NOTES
Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com
Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!
Email us to be on the show! [email protected]
MENTIONED IN THE EPISODE:

Sleep Safe Bed

Stephanie’s Research “Creating an Online Community of Support: Mothers of Children with Disabilities Working in the Academy”

Stephanie’s Research “Caregiving, Disability, and Gender in Academia in the Time of COVID-19”
...more
32min
February 07, 2025Episode 8: The Importance of Seizure Action Planning
Seizure Action Plan Awareness Week is Feb 10-17, 2025 and in this latest episode we talk about seizure action planning basics and share our experiences developing these specialized plans for our loved ones with CDKL5 Deficiency Disorder. We also share some personal tales about others’ reactions to our kids' seizures and reflect on the realities we manage as our “normal” living with a severe refractory epilepsy.
SHOW NOTES
Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com
Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!
Email us to be on the show! [email protected]
MENTIONED IN THE EPISODE:

www.SeizureActionsPlans.org

Epilepsy Foundation School Nurse Training

rescue medication = a drug that can stop a seizure quickly in an emergency

hypoxic = having too little oxygen

PO / NPO = “by mouth” / “nothing by mouth”

Sign up for our newsletter!
...more
28min
February 01, 2025 Episode 7: Advocacy, Rare Disease Day, & a Giveaway!
How familiar are you with rare disease advocacy? In episode 7 we talk about how advocacy impacts drug development as well as how it impacts the social systems our children are a part of. We share ways to get involved with organizations that champion rare diseases and encourage you to get out there and share your challenges and needs with those who can make a difference. We also share about a Rare Disease Day giveaway we are running all month long!
SHOW NOTES
Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com
Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!
Email us to be on the show! [email protected]
MENTIONED IN THE EPISODE:
Rare Disease Day Official Site
NORD Rare Action Networks By State
CDKL5 Home Video Study
Telethon Kids Team - CDKL5 Database
Ztalmy (Ganaxolone) approved for CDD
CDKL5 Centers of Excellence in the US
CDKL5 in Color Shop (Candles, Shirts, Mugs, Bags, etc!)
Sign Up For Our Newsletter!
Leave Us a Voice Message!
RESOURCES:
FDA-NIH Rare Disease Day
Rare Disease Legislative Advocates (RDLA) Advocacy Tip Sheets
Rare Disease Week on Capitol Hill
Join NORD’s Policy and Advocacy Taskforce!
NORD EDU - Free Advocacy Courses
GIVEAWAY ENTRY CRITERIA:
Help us spread awareness of CDKL5 in Color and you’ll have a chance to win a beautiful “CDKL5 - Illuminate Hope” candle in the design of your choice! Either CDKL5 green & epilepsy purple design OR CDKL5 rare zebra print design.
A perfect way to light it up for CDKL5 on Rare Disease Day or during June awareness month!
How to enter:
Follow us on either Facebook or Instagram
Like the giveaway post (Feb 1)
Tag a friend who should listen to our podcast (each tag = 1 entry)
BONUS: 3 entries for signing up for our newsletter!
BONUS: 3 entries for writing a review on Apple Podcasts or our Facebook page!
Entries must be in by February 27, 2025. We will pick one Facebook winner and one Instagram winner on Rare Disease Day February 28, 2025. Thanks for participating and helping us increase our reach!
*Shipping only to US addresses
...more
36min
January 24, 2025 Episode 6: Let's Talk Constipation
In this latest podcast episode, we delve into the challenges of managing constipation in CDKL5 Deficiency Disorder. We share our personal experiences, discuss why constipation is a common issue for individuals with this rare disease, and suggest practical tips and strategies that you can consider with your child’s doctor.
Adequate Hydration!
Getting our kids moving or standing, tummy massage.
Dietary changes, over the counter remedies, and prescription meds.
Shout out to the caregivers who chimed in to share their management tips on our Facebook post! Heather, Stephanie, Kelly, Kevin, Jessie, April, Jol, Olivia, Kara, Justice, Renee, Melissa, Emily, Joellen, Courtney, Michelle, Karolina, Danielle, Hope, Kristin, Rebecca, Stephanie, Kori, Ruth, Jacqueline, & Megan
SHOW NOTES
Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!
Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com
Email us to be on the show! [email protected]
MENTIONED IN THE EPISODE:
The Poopinator
CDKL5 Introductory Care Guide
Recommendations for the Management of CDD
RESOURCES:
Get Motility Problems in Children

...more
22min
January 10, 2025Episode 5: Deshaun's Life with Braylon (age 15)
Deshaun is a sweetheart CDKL5 mama whose positive attitude will make you smile. She is a champion of accessing mental health support and talks about how prioritizing her own mental health has made a profound impact on her life. Hope you enjoy learning a bit about her life and her son, Braylon, who is a music lover like his mama!
SHOW NOTES
Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!
Check out our website www.CDKL5inColor.com
Email us to be on the show! [email protected]
MENTIONED IN THE EPISODE:

Advocacy Abby - help with grants and resources for families

Braylon Seizure Alert Dog Fundraiser
...more
36min
January 02, 2025Episode 4: First Comes Epilepsy
Before our kids were diagnosed with CDKL5 Deficiency Disorder, they were diagnosed with epilepsy. In this latest podcast episode, we share our initial experiences receiving an epilepsy diagnosis for our infants. We also share our thoughts on building a collaborative provider relationship that works.

SHOW NOTES
Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!
Check out our website www.CDKL5inColor.com
Email us to be on the show! [email protected]
MENTIONED IN THE EPISODE:

Early Intervention (EI)

Epilepsy Monitoring Unit (EMU)

EEG

ADLs = Activities of Daily Living
RESOURCES:

Medical Advocacy Resource Guide
...more
36min
December 12, 2024Episode 3: Rachel's Life with Mimi (age 9)
In Episode 3, you’ll hear from CDKL5 mama, Rachel, who is raising her amazing nine-year-old daughter, Mimi, with her family in California. There are so many quotables in this episode! Rachel is an insightful speaker and her stories about life with Mimi are captivating.
Listen in as Rachel reflects on the unexpected path they’ve walked with CDKL5, the challenges they face balancing Mimi’s physical abilities with her significant functional disabilities, the safety measures taken to protect her, and the unique difficulties this brings to their home and sibling dynamics.
Thanks for joining us, Rachel!

SHOW NOTES
Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!
Check out our website www.CDKL5inColor.com
Email us to be on the show! [email protected]
Like the show? Please leave us a review!

MENTIONED IN THE EPISODE:

California Regional Center

CDKL5 Parent Support Group on Facebook

Huckleberry Tandem Hiking
...more
48min

FAQs about CDKL5 in Color:

How many episodes does CDKL5 in Color have?

The podcast currently has 23 episodes available.