The Jansen's Foundation

06/05/2026

2 weeks at the NIH.
Lots to be thankful for!

06/04/2026

Post dose update from the NIH

06/02/2026

What a moment!

Today I received the first dose of an investigational therapy for Jansen’s!!

Looking around the room and at the many others who joined virtually, I was reminded that milestones like this are never the work of one person. From the genecist who first diagnosed me, to the MGH researchers who designed the peptide and tested it in models developed from my cells, to the NCATS translational scientists who completed the preclinical studies, to the NIDCR team that led the protocol and made dosing possible..this moment belongs to all of them.

It is a powerful example of what can happen when patients, researchers,and clinicians work together with a shared goal.

So far, I'm feeling well and being closely monitored by an incredible team.

A special shoutout to the superhero nursing team on 5NW, who went above and beyond with their care, attention, and kindness, right down to surprising me with a tiara for the occasion.

Warrior level unlocked!

Here's to more collaborations like this, more first-in-human trials, and more treatments for ultra-rare diseases.

💙 BenchToBedside FirstInHumanTrial

06/02/2026

Had a few procedures on friday and am recovering well.

Rolling through the halls of the Natuonal Institutes of Health clinical center, I came across the famous exhibit of Christian Anfinsen’s work showing that a protein’s structure determines its function.

Decades ago, researchers were uncovering the basic principles of how proteins fold and work.

Today, those discoveries are the foundation of testing an inverse agonist, designed at Massachusetts General Hospital, through a precise arrangement of amino acids, to correct abnormal signaling from Jansen's mutated receptor.

We have made it here because of decades of investment in basic science long before there was any clear path to a therapy.

Science moves slowly...until one day you realize you're living in the future that those scientists were working toward.

05/29/2026

Testing, baselines and Bluejays!

05/28/2026

What are the odds?!

Checked into the NIH for our First-In-Human trial for… Jansen’s and my nurse is from Creighton!

Go Jays! ♥️

From Creighton to the NIH… feeling very well taken care of already. 🙌

05/27/2026

From an “unheard of” bone disease affecting fewer than 30 known people worldwide… to a First-In-Human clinical trial The National Institutes of Health.National Institute of Dental and Craniofacial Research (NIDCR at NIH)

From bench to bedside. From impossible to reality.

Honored to be part of this moment; not just for my family, but for every ultra disease family still waiting for hope.

Thank you to everyone who believed this day could happen!

Elkhorn mother participates in solo human trial for ultra-rare bone disease

Human trials featuring just one participant are rare. But when a condition is so rare it’s impossible to find enough people for a standard trial, it often falls to one person.

05/27/2026

Our story will be on 6 News WOWT at 10pm tonight

05/26/2026

Made it to the NIH. Grateful for all the love and support.
The next 52 days, this will be home.
History in the making.

05/25/2026