Before becoming a father, music was my life. Songwriting and performing around the world was my way of surviving after losing both my dad and brother at a young age. But when I was told I might also lose my daughter Rose, the music stopped.
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 has a devastating rare genetic disease, HNRNPH2.
Children with this disorder struggle to connect to their parents and siblings, to play with kids and attend school, to tolerate sounds and sensations of everyday life. Their future is unknown.
Rose 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, and could end too soon.
But today there is hope. Recent genetic treatments have shown that diseases similar to Rose’s can be stopped, even improved. But the burden falls on me to raise the money and put together the scientists to make this happen in time for my daughter and other children like her.
YOU can help Rose!
1) GIVE whatever you can. No donation is too small (tax-deductible)
2) SHARE on social media (#ToCureARose)
3) EMAIL this page to your family + friends.
The window of opportunity is closing. Our team of experts is nearly complete. Now, we need YOUR help to raise $2 million to fund the ground-breaking work toward a treatment for Rose and other children like her who currently have no hope. Together, we can do this!
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. To see To Cure A Rose Launch Concert: https://youtu.be/ZzQX1YXbhjU
To Cure A Rose Foundation is a 501(c)(3) with pending status.