Connect With Other Families

Your family is not alone. We are here to try and connect all families affected by this genetic finding in hopes to learn more, build support and provide optimal patient care. Please consider joining our mailing list so we can contact you about further family meetings, research opportunities or clinical updates.


The Yellow Brick Road Project


From the Board of Directors:

The Yellow Brick Road Project is a quest to cure HNRNPH2 mutations, our daughters’ ultra rare genetic neuro-developmental disease. The friends Dorothy made on her journey to meet The Wizard of Oz, in the timeless 1939 film, inspired the name of our organization.

Like the Scarecrow who wishes for a brain, our girls’ neurological development is severely impaired and impacts everything; we strive to improve their cognition. Like the Cowardly Lion, each one affected suffers from anxiety; we strive to find ways to give them confidence and courage to navigate in the world.

And what about the Tin Man? He longs for a heart in the story. Like him, we strive to give our girls a more fulfilling life, free from HNRNPH2 mutations and everything this despicable disease has stolen from them.

Dorothy, as the story goes, wants to return home, to where she belongs. Help us on our journey, on our Yellow Brick Road home, to a cure.”

 

Yellow-Brick-Road-LOGO-CJ-A

To Cure A Rose

Her Father’s Words:

“My daughter Rose is beautiful, kind, and determined. She’s unique. She has no words, but she tells me what she’s thinking through her eyes. When she’s happy, her laughter lights up the room. When she’s sad, her screams pierce the air. Sometimes, she looks at things I don’t see and cries when life is calm. 

Rose is facing a rare genetic disease, HNRNPH2.”

Their Mission:

To Cure A Rose Foundation was started with the mission of bringing genetic therapies to children like Rose. We have a path to create a novel antisense oligonucleotide (ASO) and gene therapy for children with HNRNPH2, opening up a second chance at life. In turn, our work will help accelerate these exciting platforms across rare diseases as a whole. Our hope is that by doing our part, we will help offer a brighter future to all these children, one Rose at a time.