The Jansen's Foundation

09/27/2026

Sometimes I look back at this journey and just marvel.

At how far I’ve come. At the people I’ve met. At the places this story has taken me. And at how a story that once felt so personal has become a story I now have the privilege of sharing for so many others in rare disease.

Last week, I had the privilege of sharing my story at the Rare Diseases International event during the United Nations General Assembly.

Sitting in a room with global leaders and decision-makers (Thank you, Spain and Egypt for bringing the rare disease resolution to the WHO!), alongside patients and caregivers from around the world, was incredibly meaningful.

Our journeys may begin with one patient, one family, one diagnosis. But change happens when we come together and keep moving forward.

As this work moves toward Geneva and the Global Action Plan on Rare Diseases, I hope we keep that momentum going and make the road a lot easier for the next patient.

“Never doubt that a small group of thoughtful, committed people can change the world.” - Margaret Mead

09/23/2026

What an absolute honor and privilege to be invited to attend today's rare disease discussion at UNGA81 in New York hosted by Rare Disease International.

Last year brought the first-ever WHO resolution on rare diseases, recognizing rare diseases as a global health priority and calling for greater integration into universal health coverage.

Now the conversation has to move from Policy to Impact.

How do we turn those commitments into real change for the 300+ million people living with rare diseases and their families?

I’m grateful to be in the room, listening, learning, and bringing the patient voice into this important conversation.

09/10/2026

Congratulations Little Levi we have another driver in our community! Woot woot!

09/10/2026

GO Levi! ♥️

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. 💙