Thank you all for making JollyFest such a success!

It’s happening!

Jan 23, 2023

So many exciting things have happened since my last post.

Olive continues to love her new PEP classroom, and is making very slow but steady progress. Children with disabilities like Olive take a LOT of therapy to master simple tasks like pulling up, standing independently, and walking. It sometimes feels like the hours and hours of therapies aren’t helping, but then Olive does something amazing and we get a burst of encouragement!

2 weeks ago was one of those weeks — Olive pedaled an adaptive tricycle FULLY ON HER OWN at PT! She’s been using this bike for over a year, and we usually push it for her ( with her feet duct-taped in, lol). We do this to help her learn the motor pattern required for something like this. My husband, Olive’s wonderful PT and I were amazed to see her do on her own for the first time!! Go Ollie Go! 🙂

On the foundation front, I officially received my 501c3 status which enables me to receive charitable donations that are tax deductible for donors. I’m super excited about this as it unlocks larger fundraising efforts I want to begin later this year. I’m working on getting my donation pages, social media, etc set up… and officially added RareOlive to my LinkedIn. Woot woot!

On the research front, we recently made a significant donation to the Gray Lab at UTSW to begin creating animal models of Olive’s disease while we in parallel finish contracting with them for our larger, multi-year gene therapy development effort. I spoke with someone at NIH who might be able to help us with funding opportunities once we are further along. Even though he couldn’t help me now, it was great to hear his encouragement that I am doing all the right things, and talking to all the right people. It’s hard to not cry when people tell you they can’t help you, as its a reminder of just how HARD this is to coordinate and fund this research on our own.

Olive is still under review with, a foundation that creates Antisense therapies for nano-rare disesases like Olive’s (for free!). I sent them a ton of information and am patiently awaiting their decision. In parallel, I got connected to the world’s leading expert on ASOs — she only treats patients abroad, BUT, I am having her review Olive’s case to give her opinion on whether ASO therapy could be an option for Olive.

I’m also tracking down a lab that can test a sample of Olive’s skin to test for the Lunapark protein. This is critical as it helps us to understand whether she has a total loss of function, or still has some protein in her cells. If she does have some protein, ASO treatment could work for her (although the scientists who studied her disease feel that its a long shot for her).

I’m also working with my amazing co-worker on a freelance project to redesign my site and create visual assets that I’ll use for fundraising etc. It has been super fun to collaborate with him and watch him bring his incredible talents to bring RareOlive to life.

More to come…