The Jansen's Foundation

09/02/2026

This is the reality for so many families who are quietly navigating a system that is stretched far beyond its limits.

We need to see it, talk about it, and acknowledge the very real dilemma families face every day.
Thank you Christina and Mike for your courage in bringing this to light and giving voice to a reality so many families are living!!

Christina Hartman and Matthew Lange-Geise are looking for a special education school for their 10-year-old daughter. It could take years, experts say.

08/17/2026

Rare should never mean forgotten.

And “too few patients” should never mean “not worth trying.”

Thank you to Gina Kolata for sharing our story so beautifully and for helping shine a light on what is possible when patients, researchers, clinicians and advocates refuse to accept that ultra-rare means impossible.

To everyone embarking on this journey in ultra-rare disease: Keep going. Keep asking questions. Keep pushing for the science.

Sometimes the road starts with just a handful of people. ❤️

Through sheer determination, Neena Nizar has become the first patient in a clinical trial testing a treatment for Jansen’s disease, a rare disorder that deforms bones. Her disease affects just 30 people worldwide. https://nyti.ms/4gf1mmv

08/13/2026

Thank you for all your texts, messages, and prayers.

Jahan did really well, and we finally got to see him last night close to 11pm. He now has an incredibly straight spine! The amazing Dr. Mackenzie worked his magic, and we are so pleased with the results.

As you can imagine, all the muscles in his body are in excruciating agony right now as they adjust to working in new ways. He spent the night in the ICU for monitoring, but this morning he fought through the pain to get into his chair. He’ll be moving to the main floor later today.

I am so incredibly proud of these guys.

Pain has been a constant part of their lives. The amount of mental gymnastics it takes to manage pain, adapt to what their bodies are asking of them, and still find a way to smile is beyond words.

As a mother, it is incredibly hard to watch your babies hurt. But I am also amazed every single day by these young men...the way they face their challenges with such fierce determination, while also having such a real understanding and acceptance of their own bodies.

They know their bodies. They know their limits. They know what it takes to keep moving forward.

And somehow, they still smile through the tears.

I’m so proud to be their mother. ❤️

08/12/2026

Next up is Jahan. (Coz why not, right!?) He’s been waiting a long time to get his back fixed, and he’ll be having a spinal fusion. We’re looking forward to a much straighter spine and, hopefully, less back pain for him. It’s a big surgery, but we know he’s in good hands.

And a quick update on Arshaan: he did really well with the procedure and has a better aligned ankle. I had a good night, and his pain is well controlled.

Thank you, pain catheter! Whoever thought of this invention is a lifesaver. Seriously!

One surgery down, one more to go. Please keep both boys in your prayers as we get through this crazines of surgeries and recovery.

08/11/2026

This summer, we have a few of our Jansen’s warriors facing surgery.

First up is Arshaan, who is heading in today for an osteotomy of his left ankle. We just sent him off, and he’s in the very best hands with Dr. MacKenzie.

After 11 years of surgeries, you’d think sending your child back into the OR would get easier. It doesn’t. We know the routine, we know he’s strong, and we know he’s in incredible hands, but the worry never really goes away.

Please keep Arshaan in your prayers today and send him all the good thoughts for a smooth surgery and an easy recovery.

07/31/2026

Im heading home!! After more than 2 months, I'm going to sleep in my own bed tonight!! My heart is SO full of gratitude.

We've successfully completed the first part of our first-in-human clinical trial at the NIH, establishing the safety of this investigational treatment. A major milestone for the Jansen's community. I am incredibly grateful to our research team, physicians, nurses, researchers, and everyone who made this possible. It was a herculean effort by everyone!

This trial has proven that a pathway exists to bring ultra-rare diseases from scientific discovery to first-in-human trials at the NIH Clinical Center. Over the past two months, (while also being a patient!) I've been working to help make that pathway accessible to many more rare disease communities, and we are going to see it happen!

Yesterday, i ended my stay by meeting with the NIH clinical director, Dr. Jay Bhattacharya. I shared with him my vision for ultra rare and he loved it! So many parts already exist at the NIH. Now we need it formalized for others to follow. We are going to see many more clinical trials for people living with rare diseases. That gives me tremendous hope for the future!

For now, I'm simply looking forward to hugging my boys, cuddling Oscar, and giving my brain a much-needed break before returning to the NIH in September for the next phase of the trial.

Thank you to everyone who has supported this journey. Together, we're proving that no disease is too rare to deserve a treatment. 💙

07/18/2026

!Dose 6 is complete! Woot woot!

After 51 days, I finally got to see my boys. ❤️ It's the longest I've ever been away from them and there were plenty of hugs and cuddles!!

Dose 6 was completed safely with no concerns!! Huge step forward.

Thank you to everyone who has sent messages, prayers, and beautiful gifts throughout this incredible journey!!

Every dose, every blood draw, and every day brings us one step closer to understanding whether this potential treatment can make a difference for people living with Jansen's disease.

07/12/2026

This week was special as Amelia and her mom Misha Michel were able to visit the NIH and participate in our Natural History Study! Amelia is am absolute warrior and stole everyone's hearts!
♥️

07/11/2026

❤️

🚀NIH is launching a first-in-human clinical trial of an experimental treatment aimed at helping people with Jansen’s disease, a rare genetic disorder that impacts bone development.

The project is led by scientists from the National Institute of Dental and Craniofacial Research and reflects years of collaboration across NIH and beyond. It also exemplifies the challenges scientists face in finding treatments for rare diseases that NIH can solve.

Read the full story ➡️ https://bit.ly/3SSiyq3.

07/07/2026

Incredible news for the MSD community. Well done go Amber Olsen and her team!

A significant milestone for the rare disease community! The U.S. Food and Drug Administration has cleared the Investigational New Drug application for an investigational gene therapy designed to treat children with multiple sulfatase deficiency (MSD), an ultra-rare, life-limiting genetic disorder.

This first-in-human study represents years of scientific research and collaboration across the Accelerating Medicines Partnership® Bespoke Gene Therapy Consortium (AMP® BGTC), bringing together patients, families, advocates, clinicians, researchers, and consortium partners to help advance this program to the clinic. Through coordinated manufacturing, clinical and regulatory efforts, the partnership helped pave the way for this important step forward.

Read more about the collaborative effort to accelerate potential new treatment options for children and families affected by MSD: https://fnih.org/news/bgtc-msd-ind-clearance/