Pikehouse Originals
Pikehouse Originals specializes in fabric creations for babies and special needs. Bibs, burp cloths, waterproof bed and chair mats, sensory quilts, ribbon quilts, slippers, g-tube pads and many other items. A portion of the proceeds supports CDKL5 DD.
@thaddeusmurdoch.bsky.social
Bermudian marine scientist, artist, father of 3 great kids including one with CDKL5 deficiency disorder.
@calancdkl5.bsky.social
Proud of the human I have become, proud Mum, Proud Wife, Proud Social Worker and Proud Patient Advocate and charity chair - CDKL5 UK BSc in Social Work and MSc in Global Health Policy
@djlavery.bsky.social
Loulou Foundation, tackling CDKL5 Deficiency Disorder in collaboration with our amazing patient families.
@women-r-smarter.bsky.social
Midlife Magic 🪩 Mile High Madness Advocate ♿ #CDKL5 🧬Neuro & #Genetic science stalker. Lover of dogs, beer, pejuta sapa, bodily autonomy, music, mountains, Pilates & witty humans. Podcasting amateur 👇🏼 https://bsky.app/profile/cdkl5incolor.bsky.social
@cnsdrughunter.bsky.social
🧠 🧬 Neuroscientist. Looking for new medicines for #CDKL5, #SCN1A, #SHANK3, #DHPS and other neurological #RareDiseases with #epilepsy
@barcelonared.bsky.social
@cdkl5incolor.bsky.social
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 and epileptic encephalopathy. www.CDKL5inColor.com
@kcorco.bsky.social
@anothermarissa.bsky.social
#CDKL5 🧬 | Former school social worker turned stay-at-home medical mama | 🎙️Producer, content creator, & co-host of the CDKL5 in Color Podcast @cdkl5incolor.bsky.social www.CDKL5inColor.com
@bsky.app
official Bluesky account (check username👆) Bugs, feature requests, feedback: [email protected]