Lightning and Love

Lightning and Love Two sisters battling one Ultra-Rare Disease.

We are racing against time to find a cure for Emma and Abby, and to raise awareness for all those suffering from rare disease!

So incredibly excited to share…FINALLY, after so much hard work from the most amazing team, the first paper linking THAP...
03/04/2026

So incredibly excited to share…

FINALLY, after so much hard work from the most amazing team, the first paper linking THAP12 to disease is posted to medRxiv and out in the world! A huge thank you to Eric Samarut, his entire team, and the many researchers and clinicians around the world who have spent the last five years working on this.

I honestly don’t have adequate words for what this means to me. I started sharing about Emma and Abby seven years ago, and soon after started Lightning and Love, hoping to understand their disease - one that still seems to affect only the two of them in the entire world. Through a lot of persistence (and some good luck), we were connected with an incredible researcher, and I’ve had the privilege of watching this work grow and slowly come together into the paper shared today.

The fact that someone cared enough about our girls to study their condition… that their story is scientifically meaningful… that their lives are contributing to something lasting in the world of science - it’s hard to wrap my head around.

These girls are here for many reasons (including bringing immense joy to our family), but being the spark behind this research is a pretty special one.

None of this would exist without Emma and Abby. Watching them unknowingly push science forward is one of the greatest honors of my life.

Thank you again to Eric and the entire team for believing in our girls and fighting for them through scientific research. We are beyond grateful and so very excited for what comes next!

Check out the research paper here:
https://connect.medrxiv.org/qr/2026.02.27.26347078

It’s been a few years since we’ve done this, but we’re so excited to bring back Raise a Glass for Research! 🍻🧬This year ...
08/28/2025

It’s been a few years since we’ve done this, but we’re so excited to bring back Raise a Glass for Research! 🍻🧬

This year we’re teaming up with the Rory Belle Foundation, who do such incredible work supporting families living with rare genetic conditions.

We’ll be at Hogshead Brewery on Tuesday, September 2nd, 2025 starting at 5 PM and hanging out until close. Come enjoy local brews, cocktails, wine, and eats—all while supporting two incredible causes. For every drink purchased, $1 will be donated to the Lightning and Love Foundation and the Rory Belle Foundation.

We’ll have raffle prizes, bake sale goodies, and some fun little giveaways—but mostly, it’s a chance to come together, share some laughs, and catch up over drinks, food, and conversation.

It means so much to us to share our missions and bring our community together! We hope to see lots of familiar faces (and new ones too!).

We’ve been quiet here for a while…Not because we’ve stopped fighting—but because sometimes, the weight of reality hits h...
08/13/2025

We’ve been quiet here for a while…

Not because we’ve stopped fighting—but because sometimes, the weight of reality hits hard.

There are only two known children in the world with this ultra-rare genetic disease. Both of them are our daughters.

For a time, we chased the idea of a cure with everything we had—because what else would a parent do? But as the years passed and the girls got older and the science moved slowly and no additional THAP12 patients were found - our lives kept moving too. We’ve celebrated birthdays, watched a toddler grow, cheered at the girls ice skating performances, managed medical needs, held hands in hospital rooms, and rode the roller coaster of extreme highs and lows.

And we accepted that we likely won’t be able to cure our girls in time.

Saying that out loud still takes my breath away. I started lighting and love for one and one mission only - to save my daughters.

But with time my perspective is changing. Because even if we can’t save our daughters, we can still change the future for the next child. We can still bring new discoveries of a disease-causing gene. We can help shape the research space for rare disease. And with that legacy, my girls don’t need to be “saved”. They will live on forever in the impact they are making in the world.

So…let the fire under my butt be reignited!

Research has been churning quietly in the background of our life. Pieces are falling into place. And we’re stepping forward again—not just for lightning and love, but for every family who will one day stand where we are now.

We’re still here. And we’re not done.



📸 .photography

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