Despair to Hope
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.
She can no longer say “daddy”. She continues to retreat into a world I’m not part of. I fear her life will only get more painful if nothing is done.
But today there is hope. Recent genetic treatments have proven to stop and even improve diseases like Rose’s. But the burden falls on us to raise the money and put together the scientists to make a treatment happen for Rose and other children like her.
I need YOUR help today to give all the Roses a second shot before it's too late. No donation is too small or too big. I am forever grateful for your support.
- Casey, Rose's dad
Our 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.
My Rose
We Need Your Help TODAY
HNRNPH2
HNRNPH2 is a rare genetic condition involving a gene on the X chromosome. It encodes the protein HNRNPH2 that helps gene messaging inside the cell, a function fundamental to brain development. Symptoms start soon after birth, and often worsen over time. Children with this disorder experience developmental delays, intellectual disability, autism symptoms, tone abnormalities and seizures. They struggle to connect to their parents and siblings, to attend school, to tolerate sounds and sensations of everyday life. They lack the words to communicate their feelings, and scream without stopping, unable to explain why. Many of these children degenerate over time. Some die young. Their futures are riddled with pain and difficulty.
A number of researchers and foundations are working hard to better understand this disease. To Cure A Rose Foundation aims to play our part by working toward an impactful genetic treatment for HNRNPH2 which offers real hope to Rose and other children like her.
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