Kiera's Hope

[Kiera's Hope @CDKL5research]

Today is International CDKL5 day, and the month of June is awareness month! Lime green is our color, and its amazing to see the efforts CDKL5 organizations around the world have made to light up famous monuments tonight in green, in honor and in memory of our CDKL5 children.

[ASOCIACIÓN CDKL5 @cdkl5spain]

CDKL5. TU IMPULSO ES MI PULSO. DÍA INTERNACIONAL 17 JUNIO 2023

👉🏻 https://t.co/p5BmYS9hfs

💚Asociación de Afectados #CDKL5💚
Video nacional de familias #cdd 17 de junio Día Internacional del Síndrome por Deficiencia CDKL5

💚La cura está en camino 💚

@lapegatina GRACIAS ❤️

[Kiera's Hope @CDKL5research]

@CDKL5AdvocacyM @CDKL5Alliance @cdkl5spain @ITA_CDKL5_IVLC @CdklFr @CDKL5_IFCR Very sad to hear! It takes courageous people to be the first, and my heart breaks💔. Praying for the family and researchers involved 🙏. A difficult day 😔

[Kiera's Hope @CDKL5research]

Happy Mother’s Day to all the incredible and courageous moms of our CDKL5 children! 🌸💐🌺💕
May your day be joyful and blessed as you hold your sweet angels close.
Some of you are holding your baby’s memories in your heart, and we honor you. Our prayers are with you. 🙏❤️

[Kiera's Hope @CDKL5research]

Today is Giving Tuesday! Thank you for considering a donation to help continue to provide hope to our children and families! https://t.co/bIzY0Ggvdj

[Kiera's Hope @CDKL5research]

Sending out prayers and well wishes for everyone’s health and safety who is impacted by hurricane Ian. It looks like the days and weeks ahead will be very difficult, but please know your CDKL5 family is here for you. 🙏🙏🙏

[Kiera's Hope @CDKL5research]

June is CDKL5 Awareness Month! Our friends at CDKL5 Canada are hosting the CDKL5 International Family Conference from June 17-18. Please join the global CDKL5 family for this exciting virtual event! For more details and to register visit: https://t.co/TTUIzdw7Ri

[Kiera's Hope @CDKL5research]

Every single person has the ability to change the world! Thank you for helping us make a difference in the lives of those living with CDKL5 Deficiency Disorder.
https://t.co/bIzY0Gy6BT

[Kiera's Hope @CDKL5research]

Fantastic work, Dr. Zhou and colleagues!! This is Hope. Thank you!!!
Penn Study Suggests Genetic Disease CDKL5 Deficiency Disorder Could Be Treatable after Childhood - Penn Medicine https://t.co/wNTbQpWb4r

[Marinus @MarinusPharma]

A milestone day for Marinus and the #CDD community, we are thrilled to announce results from our Phase 3 #MarigoldStudy for children and young adults with CDKL5 Deficiency Disorder.

Full $MRNS top-line results: https://t.co/GPZTWv9iTv

[Kiera's Hope @CDKL5research]

https://t.co/GYQq5q4sTu

[Kiera's Hope @CDKL5research]

Wonderful news for #CDKL5 patients! The Marinus phase 3 clinical trial results for Ganaxalone are in and the results are very encouraging! Thank you #Marinus Pharmaceuticals, all the study participants research teams that made this trial possible, and for bringing hope to #CDD.

[Kiera's Hope @CDKL5research]

Happy Mother’s Day to all the everyday Heroes who hold our world together! ❤️. You are loved! Your endless love, courage, determination, patience and kindness make our lives good. God bless each of you. May today be a day of joy, rest and celebration with your families! 💕🌈

[Kiera's Hope @CDKL5research]

Such good news for our CDKL5 kids, it will be much easier now to obtain Epidiolex!!!

[Dravet Syndrome Foundation @curedravet]

On Monday, the DEA notified GW Pharmaceuticals that it no longer considers Epidiolex a controlled substance under the federal Controlled Substance Act. https://t.co/5sKdlftdO4

[Kiera's Hope @CDKL5research]

Fly high, sweet angel #CharlotteFigi your work on earth is done. Your beautiful soul is now free from seizures forever. Thank you for inspiring the world and showing that #CBD, #Charlottesweb can help so many. You will be greatly missed 💔😢

[Kiera's Hope @CDKL5research]

Ovid Therapeutics Announces Initial Data with Soticlestat in CDKL5 Deficiency Disorder and Dup15q Syndrome | BioSpace https://t.co/6cuJRSysWj

[Kiera's Hope @CDKL5research]

https://t.co/i9Q9SBAqjE

[Kiera's Hope @CDKL5research]

Awesome interview with Dan Lavery! #LoulouFoundation https://t.co/Huvm12aAIr

[Kiera's Hope @CDKL5research]

Wonderful advances in #CDKL5research !
Mouse trial shows gene therapy potential for treating childhood brain disorder | Imperial News | Imperial College London https://t.co/heV0STEfi8

[Marinus @MarinusPharma]

#ICYMI the LouLou Foundation lit up the Burj Khalifa-the largest building in the world-for @rarediseaseday and #CDKL5 research. What an amazing way to bring attention to this worldwide population we are trying to help! #RareDiseaseDay #CareAboutRARE https://t.co/AGFhlMO8j7