No family should face rare disease, caregiving, or grief alone.
Hope4Harper turns Harper’s story into a community of strength and hope for all.
Mission Statement
Hope4Harper began as one family’s desperate search to save their daughter, Harper Elle Howard. Her courage, her legacy of scientific donation, and her family’s fight lit a path in the dark. But what started with one child’s diagnosis has grown into a mission far greater than our own family.
Rooted in real stories, Hope4Harper is now a community that connects and supports families navigating rare diseases, complex medical journeys, and the challenges of life after loss. We are shaped by Harper’s story, but we are built for yours.
Quick Pathways
Discover how one family’s journey with CDKL5 became a beacon of hope for families facing rare diseases, medical complexity, and loss.
Hear from siblings who grew up alongside rare disease—their voices, their strength, and the unique perspective only they can share.
Watch and listen to real families share the questions, fears, and moments of grace that often go unspoken in the rare disease community.
Featured Story or Blog
A New Approach to Treating CDKL5 and Possibly More!
The Jensen Lab has identified a new approach for treating CDKL5 disorder that has crossed into the possibility of treatment of other epilepsy, neurodevelopmental, and neurodegenerative disorders in particular, including Alzheimer’s.
It Sounds Simple to Say I Will Donate My Child to Science
When you are the parent of a child with a life-threatening disorder, you must prepare beforehand. There has to be a balance between living the life you’ve been given with this child to the fullest and being “ready” for an abrupt end.
