🙌 June was HUGE for @cdkl5incolor.bsky.social
We increased our following by:
🔹 31% on Facebook
🔹 45% on Instagram
🔹 83% for our newsletter
Our June awareness month podcast episodes are available for free on Spotify, Apple Podcasts, and YouTube! Check them out!
15.07.2025 18:22 — 👍 1 🔁 1 💬 0 📌 0
We are taking a summer break from releasing new episodes. See you in September for more #CDKL5 stories! Be sure to catch up on any episodes you have missed while we are away!
10.07.2025 13:59 — 👍 1 🔁 1 💬 0 📌 0
Listen! Like! Share!
23.06.2025 18:37 — 👍 2 🔁 0 💬 0 📌 0
Today is World #CDKL5 Day and we invite you to pick an episode of the CDKL5 in Color podcast and have a listen. Learn from our community. We are here, waiting on a healthier future for our children. www.cdkl5incolor.com
17.06.2025 22:43 — 👍 1 🔁 1 💬 0 📌 0
Hey !
Our quarterly newsletter is out! preview.mailerlite.io/emails/webvi...
10.06.2025 20:47 — 👍 0 🔁 0 💬 0 📌 0
'I knew something wasn't right': Baby's journey to rare diagnosis after 30 seizures a day
📢 At 6 months old, Mila was diagnosed with CDKL5 deficiency disorder (CDD).
05.06.2025 17:32 — 👍 1 🔁 1 💬 0 📌 0
YouTube video by CDKL5 in Color
Get to Know CDKL5 Deficiency Disorder
June is #CDKL5 awareness month! youtu.be/yujrZPijW2c?...
02.06.2025 11:56 — 👍 1 🔁 2 💬 0 📌 0
YouTube video by CDKL5 in Color
Get to Know CDKL5 Deficiency Disorder
💚 June is #CDKL5 awareness month youtu.be/yujrZPijW2c
01.06.2025 14:47 — 👍 0 🔁 0 💬 0 📌 0
Episode 17: Ed’s Life With Haley (age 18)
CDKL5 in Color · Episode
Grandparents are special people. Listen to us chat about our children's grandparent relationships and get to know Ed, CDKL5 grandfather to 18-year-old Haley! open.spotify.com/episode/76HZ...
23.05.2025 22:13 — 👍 2 🔁 1 💬 0 📌 0
Hey !
We are working on our next quarterly newsletter all about #CDKL5 awareness month (June)! Did you read our first newsletter? Check it out here: preview.mailerlite.io/preview/1263...
13.05.2025 18:40 — 👍 3 🔁 1 💬 0 📌 0
Episode 16: Let’s Talk About Acceptance
CDKL5 in Color · Episode
Acceptance is a journey and it’s not linear. Hear us chat about it. #CDKL5 open.spotify.com/episode/1xG5...
11.05.2025 13:33 — 👍 0 🔁 0 💬 0 📌 0
Congratulations to the #CDKL5 Program of Excellence Pilot Grant 2025 awardees! These grants, awarded by the Loulou Foundation in collaboration with the @ODC_UPenn support critical research on #CDKL5. #raredisease #louloufoundation #grants
01.05.2025 13:24 — 👍 1 🔁 1 💬 0 📌 0
Episode 14: Carol-Anne’s Life with Amber (age 20)
CDKL5 in Color · Episode
✨🎙️ New podcast episode is out and we are SO excited to have Carol-Anne from CDKL5 UK in the studio talking about life with her soon-to-be twenty-year-old daughter, Amber!
open.spotify.com/episode/5tpG...
20.04.2025 17:46 — 👍 6 🔁 2 💬 0 📌 0
How much do you know about adaptive clothing? Have a listen to the things we think about when dressing our kids with #CDKL5 (and how we dress now too!).
Listen on Spotify and Apple Podcasts!
04.04.2025 16:35 — 👍 3 🔁 0 💬 0 📌 0
Check it out!
31.03.2025 18:15 — 👍 0 🔁 0 💬 0 📌 0
Newsletter Sign Up
CDKL5 in Color Respects Your Privacy
We collect personal information from users who want to be a guest and/or subscribe to our newsletter, such as their name and email address. This data is used to se...
✨🎙 New podcast episode is out! 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!
Sign up so you get all the info right to your inbox: www.cdkl5incolor.com/newsletter-s...
🎧 Listen on Spotify or Apple Podcasts
29.03.2025 17:58 — 👍 2 🔁 1 💬 0 📌 0
Hey! How Are We Doing??
CDKL5 in Color · Episode
New episode is out and it’s a quick but good one!
Listen on Spotify or Apple Podcasts! #CDKL5
open.spotify.com/episode/7J7h...
28.03.2025 23:59 — 👍 0 🔁 0 💬 0 📌 0
Discover Our Exclusive Range at CDKL5 in Color
Store of CDKL5 in Color.
🚨 Our pop-up shop is closing! Grab your gear to spread #CDKL5 awareness before it's gone! Shirts, totes, candles, mugs, and more!
Orders must be placed by March 30.
🛍 cdkl5-in-color.printify.me/products
28.03.2025 01:56 — 👍 1 🔁 0 💬 0 📌 0
CDKL-family of neuro disorders, wow! #CDKL5 #CDKL2 #CDKL1
15.03.2025 15:09 — 👍 2 🔁 0 💬 0 📌 0
This was a fun (fun? 🤔) episode to record because it was all still fresh in my mind after spending two weeks inpatient with my son for flu A!
Never navigated a hospital stay with your child? Tune in to hear what it’s like. If you’ve been there, nod your head along with us as we share some stories.
07.03.2025 20:40 — 👍 1 🔁 0 💬 0 📌 0
When you are primary caregiver to a medically complex child, being able to travel is an incredible challenge so I absolutely appreciate when there are virtual options available!
24.02.2025 17:34 — 👍 2 🔁 0 💬 0 📌 0
This latest episode of the CDKL5 in Color podcast is a timely one as today is #NationalCaregiversDay. Tune in to hear how caregiving duties have impacted the career of this #CDKL5 mama.
21.02.2025 15:36 — 👍 0 🔁 0 💬 0 📌 0
Newsletter Sign Up
Newsletter Sign Up
We are preparing for our first @cdkl5incolor.bsky.social quarterly newsletter to go out in March. Are you on our mailing list? www.cdkl5incolor.com/newsletter-s... #CDKL5
20.02.2025 15:17 — 👍 1 🔁 1 💬 0 📌 0
Thank you for listening!
19.02.2025 19:42 — 👍 3 🔁 1 💬 0 📌 0
We are working to amplify #CDKL5 stories! Have you listened to the CDKL5 in Color podcast yet? Give our page a follow please!
19.02.2025 20:43 — 👍 1 🔁 0 💬 0 📌 0
Episode 7 of the CDKL5 in Color podcast is out! Entitled "Advocacy, Rare Disease Day, & a Giveaway" we talk about rare disease advocacy and the impact getting involved can have on drug development and influencing the social systems our kids are a part of. Have a listen on Spotify or Apple Podcasts!
18.02.2025 19:41 — 👍 1 🔁 1 💬 0 📌 0
Spread the word for #CDKL5!
06.02.2025 20:25 — 👍 1 🔁 0 💬 0 📌 0
FutureNeuro is the Research Ireland Centre for Translational Brain Science, based in RCSI University of Medicine and Health Sciences. Our vision is to change the patient journey for people affected by brain conditions.
Rare Disease advocate in CT. Raising Awareness and advocating for Rare Diseases patients and caregivers.
Now live: https://rarectadvocate.com - Archive and Reference Links
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
PI of the Functional Genomics lab (https://fungenlab-ugent.be/) at Ghent University.
Elucidating the genetics of neurodevelopmental disorders.
Special interest in the role of the non-coding genome during neurodevelopment.
On Mondays Jon Stewart hosts The Daily Show, but on Thursdays he hosts The Weekly Show. Listen wherever you get your podcasts & watch on YouTube.
Physician-scientist @stanford medicine, AHFTC, genomics of rare disease, cardiovascular genetics, exercise multiomics, cardiomyopathy, novel therapeutics and data. #motrpac #UDN #Gregor #CFDE . Husband, kids and cats, mountains and snow. Resist hate.
Padre de Maléfica y Mazinger. Todo lo que aspiro en la vida es a querer, ser querido y hacer reír a alguien de vez en cuando.
Feminista, transinclusivo, neurodivergente, geek, rojo, autónomo, informático, campista y un poco intensito a veces.
Family Advocate @Little Lobbyists, health care advocate, PR and Comms professional, Michigan mom, caregiver, and “emotional support human” to my dog.
My views are mine and mine alone.
Family-led group advocating for our kids with complex medical needs and disabilities. Little Lobbyists Action Network is a 501(c)(4) org.
Reporting from the frontiers of health & medicine.
Dad, husband, President, citizen. barackobama.com
Husband, dad, veteran, writer, and proud Midwesterner. 19th US Secretary of Transportation and former Mayor of South Bend.
Sen. Sanders of Vermont, Ranking Member of the U.S. Senate Committee on Health, Education, Labor & Pensions, is the longest-serving independent in congressional history.
WBUR is Boston’s NPR. A public media leader committed to exceptional journalism on-air, online, on-demand and on stage.
Author, editor, activist, cat lover. Founder of the Disability Visibility Project.
#DisabilityJustice feed I created:
https://bsky.app/profile/did:plc:65kss3ewg5ida5mjyuk73v5r/feed/aaaba7ikg4sho
More about me
https://linktr.ee/disability_visibility
U.S. Senator from New Jersey.
We're focused on lifting up people with personal health care stories via social media & holding accountable the elected officials voting against our health care
Meet the Press is the longest-running television show in history. If it's Sunday, it's Meet the Press.
A movement of 1M+ people rising for all families to thrive. All content from MomsRising Together 501c4 social welfare org unless otherwise stated. Home of the #MomSky: Truth. Action. Care.
I ❤️ Medicaid
@littlelobbyists.com Executive Director & Co-founder advocating for children with complex medical needs and disabilities.
Fighting for disability justice, health equity, and tater tots for all.
