Cure for Cade

02/15/2026

Take a moment to appreciate how cool your kids are.

02/09/2026

There’s a kind of anxiety that comes with parenting a medically fragile child that never really turns off.

For us, a cold isn’t “just a cold.”
If Cade gets sick, he can’t go under anesthesia. And that means plans pause. Progress pauses. Hope feels like it’s holding its breath.

So yes—I carry Clorox wipes everywhere.
Hand sanitizer lives in every bag, every pocket, every cup holder.
I clock coughs. I watch hands. I do the mental math every time we leave the house.

It’s exhausting to constantly be the barrier between your child and a world full of germs you can’t see.
To weigh joy against risk.
To wonder if you’re being careful enough—or too careful.

People see caution.
They don’t see the stakes.

They don’t see how much rides on a healthy window.
How one fever can close a door we’ve waited months—or years—to walk through.

This is what love looks like for us.
Not fear, not control—just vigilance.
Just doing everything we can to keep his body ready for the moments that matter.

And if you see me wiping something down one more time?
That’s not anxiety talking.
That’s a mom protecting possibility.

02/08/2026

Not how we thought the day would go. He is ok. The doctor sent us home and said he’s just going to have a big bruise. We will keep monitoring but he is back to his normal self.

02/07/2026

A day at the zoo

02/05/2026

Hope Drive looks like parents refusing to give up on their children.
Being here, surrounded by families navigating rare diseases, clinical trials, and medical uncertainty, has been deeply humbling and inspiring.

Every parent is fighting their own fight — learning medical language, advocating for access, and holding hope through fear and waiting. This is what parent advocacy looks like. This is what rare disease awareness really means.

For every family fighting for treatment, accessibility, and a future for their child — you are not alone.

02/05/2026

We had some down time so we went to

02/05/2026

Everything we have been working for!

New SPG50 Gene Therapy Trial
Interventional / Gene Therapy Study

This clinical trial is enrolling participants in an interventional (gene therapy) study for individuals with SPG50. Enrollment into the treated arm is limited, protocol-defined, and site-specific.

How it works
📋 1 gene therapy treatment delivered by a single spinal procedure
📋 Follow-up visits to monitor health and development over time

Important information
🔹 Treated-arm enrollment is limited
🔹 Eligibility is determined by the clinical trial protocol
🔹 Additional study sites in Italy and Spain are enrolling soon

📩 Email Please contact studyinfo@Elpidatx.com for questions about trial status and eligibility. More details can be found here https://lnkd.in/gS9g2ssQ

🔗 Register with Citizen Health to receive updates about future studies and https://lnkd.in/gyVaGCQq

02/04/2026

The wait is over, we are back!

12/27/2025

12/23/2025

All good news

11/09/2025

We are so lucky to have this incredible space in our town! And now a coffee shop?!?! this is so exciting!