Hope4Harper CDKL5usa
Learn more about Harper http://www.Hope4Harper.com
Hope4Harper is the #CDKL5USA patient advocacy organization that was created in honor of, Harper Elle Howard, who lost her life to a rare genetic mutation known as #CDKL5. In 2016 Harper donated her organs to scientific research for CDKL5 so that we could continue to work to find a cure, and support families living #LifeWithCDKL5 and #LifeAfterCDKL5.
08/05/2024
https://pacificmedicalacls.com/seizure-disorders
Seizure disorders: Types & causes | Pacific Medical ACLS Learn about different types of seizure disorders, their causes, and effective management strategies. Explore insights from Pacific Medical ACLS.
14/04/2024
https://youtube.com/shorts/YaybYYEu9qU?si=1aMgvYaLEVuejkAm
Marnie's Advice to New CDKL5 Parents #cdkl5 #family #h4h #rare #parenting
19/03/2024
https://youtube.com/shorts/7YwD4QkIVVs?si=JRS9zTgadxkrm1d_
Nora’s CDKL5 Story: Part Two #cdkl5 #h4h #thedisorderscare #parenting
18/03/2024
15/03/2024
https://youtu.be/rMqlgtS8yXE?si=vBpfgfQghjeQbjRs
Brain Donation: What to consider, how it works and how it can help In this important discussion with rare epilepsy moms who made the decision to donate their children's brain tissue upon passing, we discuss a number of criti...
29/02/2024
It's Today...
A Gift for Future Generations - Brain Donation: What to Consider and How it Works - DEE-P Information Resource Center In this important discussion with rare epilepsy moms who made the decision to donate theirs children’s brain tissue upon death, we will discuss a number of critical elements about this…
Jainu’s plea...
20/11/2023
was an unforgettable experience but it’s good to be back to
20/11/2023
Dustin’s brief remembrance of HS French got us through Paris and motivated the kids to learn a foreign language! Harper would have ignored me in any language! Au revoir Paris!
19/11/2023
Conquered The Eiffel Tower 918 ft to the top!
19/11/2023
still under construction!
19/11/2023
was amazing! I know this would have been Harper’s favorite!
19/11/2023
French hat and crepes!
This kid can fit in anywhere!
19/11/2023
Books add weight to our check bag but we had too! and I was so hoping for
19/11/2023
My favorite spot in was at the world famous Angelina’s cafe!
19/11/2023
The history is captivating!
19/11/2023
Getting to this side of the world took us 9 hours so after the conference we decided to spend 2 extra days in another country before heading home! Daddy was sad because he chose Switzerland but the rest of chose Paris, France! Poor Daddy!
18/11/2023
Seth can adapt to any life! Probably an early lesson from Harper living
Videos (show all)
