It’s been a long time since I’ve posted here. In part it’s because it’s been “all quiet on the medical front”. There had been no movement about a treatment. We have been working with our dog, Howie, on some service skills. But otherwise, we’ve just been waiting. And losing hope.
In October (2023) the founder of the Dion Fund, Joe Dion reached out to me through instagram. Two of his children, Peter and Maggie, had recently been diagnosed with 2C and they had started a foundation to pursue a treatment through the Johnson Lab at VCU Children’s Hospital. While it took us a while to finally sit down and meet, after meeting with them we had renewed hope that there was something we could do. Where before we lacked the ability to move the needle on a treatment, there was finally something we could do to have a positive impact on a treatment for our children.
The Dion Foundation has already fully funded the first of three necessary research steps in a clinical trial - mouse studies. As we continue to fund future stages of this clinical trial, we have set our goal at $4 million dollars. This will fund the toxicology studies and the human trials, if all goes well.
A thing that I didn’t know - or maybe I just didn’t internalize it - before C’s diagnosis is how intertwined profit is with progress in medicine. And this isn’t to disparage the companies doing amazing work for patient populations. It’s just that it’s not financially viable for them to do anything for our kids.
And our kids, all kids, deserve to come before profit. All kids deserve their childhoods.
So, we are really going for it. It’s finally in our hands to save our kids.
On January 5th, 2024, we launched The Brave Campaign. The goals of The Brave Campaign are to highlight the bravery of hope, the joy of childhood, and the fight to return childhood to the kids who have to grow up too fast. Kids with rare and life-limiting diseases don’t get to have a childhood like most kids; they have to manage their illnesses, understand their limitations, keep an eye on their health in ways that their peers do not.
100% of the purchase price of Brave Campaign products will be donated directly to VCU Children’s LGMD program. This means every penny you spend on a Brave Campaign item will go to helping C and kids with her subtype of MD. We are not reimbursing ourselves for material or labor, and all fees associated with those listings will be covered under Rose + Resilience and Camille James. We are really going for it.
For fun product sneaks, please check out instagram.com/roseandresilience
As part of The Brave Campaign we will be including a few new options on “The Brave Campaign” tab:
Give One option: There’s no way to sugar coat it, it sucks being frequently hospitalized. The “Give One” option sends a bracelet to a kid that is currently hospitalized. We love to spread joy - let’s make kids like C feel a little less alone when they need some joy.
Round Up option: Our community has been, and continues to be, remarkably generous towards this cause. We are profoundly grateful. If you want to add additional funds to VCU children’s as part of your purchase, there will be listings with dollar amounts that can be selected to automatically add a small donation.
The Brave Campaign launches with Brave and Starlight bracelets (with more to come!), Starlight bows, and Brave bow sets on January 25th at 2pm CST. We hope you will shop this launch and the many more drops that come after it. We are so grateful to have you in our corner, fighting with us for Charlotte and all the other kids that deserve as much of their childhoods as we can give them.
