Summer is absolutely insane for us! Rose has been wanting to go on walks outside, even when it’s 105 degrees outside - sometimes I think she’s tougher than dad. Managing the girls, the foundation, and the drug development has been challenging, but rewarding and so full of purpose. I’m grateful for our board, our Chair Lowell Simon, our Executive Director Genevieve Swilley, and our new addition, Peter Sleeper, for helping keep the engines running!  

Most of all, I’m grateful for you. Since you’re such an important part of Rosie’s Army, I want to fill you in on some of the exciting news about what’s been happening behind the scenes. 

Earlier this summer, I helped start Everlum Bio, a research lab dedicated to helping foundations like ours develop treatments for rare diseases. This is one of the places we are working on Rosie’s treatments, and I’m so excited about what this will mean for all the other families like ours, who can now access affordable drug development without the overhead of big biotech companies, or the delays found in academic research settings. Learn more about Everlum Bio here… 

Right now, we’re in the process of developing oligos (short for oligonucleotides…essentially the genetic bandaid that can help cover/knockdown/override Rose’s mutation depending on the design and method!). We just had a meeting with the ASO designer who will be working on these, and we’ll be testing over 100-200 designs on Rose’s cell lines to see which will work for her. Each design will be printed for $300 each, and we’re poised to start making these next month. 

It would make a huge impact if you would consider sponsoring one or more of these oligos. So often, when I’m talking about Rose’s disease or the drugs we’re designing for these kids, I’m stuck looking at a string of letters and numbers that feel cold and clinical compared to the love and support behind this work. It would mean the world to know that each and every one of those designs doesn’t just have a number attached to it, but a name. The name of someone who believes in Rose, and believes in these children. Sponsor an Oligo here… 

Over the past few months, we’ve had some great fundraisers: In May, Cruise to the Edge (a 5-day Music Festival on the Sea!) featured an Auction supporting To Cure a Rose, and my good friend Raf Robinson hosted the Hill Country Jam in Dripping Springs. In June, my dear friend and old bandmate Zak Loy turned his 40th birthday party into a benefit party for Rose! I’m so grateful for everyone who made these events possible, and I’m so excited for the events we have planned for the fall. 

Right now, we’re working on a cool fundraiser in the hip Dallas neighborhood, Deep Ellum, and a big play-time extravaganza here in Austin (featuring golf, cornhole, washers, games, and more!). We’re also looking at our calendar and gearing up for the 2nd Annual Champions for a Cure Tournament, as well as RoseFest later next year. Stay tuned for more info on that, and let us know if you have any questions or want to get involved! We would love your help putting these together. Reach out about our upcoming events here… 

Overall, it’s a crazy, exciting, and scary time, and I’m grateful to have you on our team. Rose and I couldn’t do this without you. Once again…thank you. 

Fighting together for these children, 

Casey

Recently, Rose started walking up and down the stairs. I was so excited, because it was a level of autonomy that she hadn't had before. But it comes with a cost, because if she falls even one time it could be catastrophic. I have baby gates for a 6 year old. Her ABA therapist sent me a video of her stepping on a stool to a sink, and everyone was so excited.  She was excited. Because she stepped up onto a stool. She can't talk, she can't understand what's going on most of the time, she feels immense pain, she is still in diapers - so those are our wins. 

I see her "trying" to do things other people do, pushing herself, but she can only get a small percentage of it. It's like she's got one hand tied behind her back to play baseball. She's surrounded with people to help her, and she's giving everything she's got but, until we remove the rope off her hand, she will always be one handed.  And the thought of her losing everything she worked hard for when she reaches puberty is looming.  But she pushes herself nonetheless. If she's willing to, how can I not? 

We've recently hired Perlara to help us manage the drug development and partnerships on the science end. Her cells are about to be turned into brain cells, her humanized "Rosie" mouse is being created, and we're a couple of months away from our first ASO drug design. We're getting much closer, thanks to you. 

Imagine a world where the next child with a rare disease, of the roughly 200m that exist on this globe, has a path forward. Instead of waiting for a pharma company to make a drug in 30 years, and only if it's massively profitable. Imagine a world where this is no longer a dead end but a "procedure" like a surgery or an MRI. A process we can repeat that saves lives. 

That's my vision for these children. We have the technology today to make this possible. But the financial models don't work yet for some of these diseases and the process is inefficient. The advancement of this science won't happen without the money. You are making that possible, and it will help change healthcare forever. 

While I celebrate the wins for Rose and for our Foundation, We have a steep climb to the top of this mountain, and I keep a sober thought on what the real goal is. We MUST give Rose and all the other Rose's out there a chance at being able to thrive in this lifetime.  Rose won't give up, she won't let me give up, and I have a feeling you won't either. 

Thank you - because of you, these children are seen, they are heard, and they are being fought for.

- Casey