A Cure For Everett

08/28/2026

I am so grateful that my son Everett’s story was included in this week’s CNBC Cures newsletter. It spotlights the common challenge Rare Disease families face in funding the development of treatments and cures.

Our story is no different. Scientists are actively working on a treatment for Everett, but we need to raise approximately $3 million to fund it.

You can learn more about Everett’s ultra-rare diagnosis and how you can support our journey to change the trajectory of his life at
https://www.acureforeverett.org.

Every action helps turn hope into action.

Thank you for standing with us.

Check out the feature in the link below (scroll all the way to the end)!

https://link.cnbc.com/public/47246617

In past newsletters we've talked about the financial hardships faced by families living with a rare disease, but up until now, we haven't actually provided a road map to follow that could help take some of the stress out of planning for them.

08/28/2026

Everett is keeping me on my tippy toes, per usual. We’ve been up and down this week with seizures and congestion this week and trying to refine what helps him feel best.

And have shout out Everett’s Pediatrician’s group at Austin Regional Clinic that has been helping us share Everett’s story. We’re grateful for the support. 🩵

Every action helps move us closer to a cure for Everett’s ultra-rare genetic condition.

You can help support our journey and change the trajectory of my sweet boy’s life at ACureForEverett.org.

Thank you 🙏

08/24/2026

Dr. Thompson at Austin Regional Clinic has been a core part of E’s care team from the beginning and we are so grateful for the knowledge and support close to home. ❤️

When Marissa’s baby Everett was eight weeks old, he was diagnosed with a hexokinase 1 mutation (HK1)—an ultra-rare neurodegenerative genetic condition found in less than 50 people across the world.

Marissa says ARC Pediatrician Carla Thompson, MD, FAAP, has been the perfect match for Everett’s medically complex case, providing coordinated, comprehensive health care.

This year, a lab in Austin began working to create a treatment designed specifically for Everett’s genetic condition.

Keep reading to hear Marissa and Everett’s story and learn more about ARC Pediatrics: https://bit.ly/4iobcFn

08/20/2026

Everett is a miracle baby and scientists are actively working on a miracle for him.

Want to help fund our miracle? We need to raise an estimated $3million to develop the treatment and cure for Everett’s ultra-rare genetic condition. You can donate and support at ACureForEverett.org.

Every share, follow, donation and prayer move us closer to a cure.

Thank you 🙏 🩵

08/18/2026

You can help turn dreams into a reality. Help us fund a cure for Everett’s ultra-rare genetic condition by making a donation at acureforeverett.org or at the link in our bio.

Thank you for all the love, support, donations and prayers.

We feel it.

💙