Strides for CJD—Central Indiana

04/24/2026

Some exciting news in the world of CJD research:

The Broad Institute at MIT has officially initiated a first-in-human clinical trial for an investigational drug targeting the root cause of prion diseases like CJD.

This innovative drug, administered via a spinal tap, acts like a dimmer switch, reducing the body’s ability to produce the harmful (misfolded) PrP protein in the brain. Research indicates this drug works to prevent new damage by stopping the misfolding process (so this would be a treatment, not a cure).

This specific Phase 1 trial, funded by the National Institutes of Health (NIH), is focused on testing the safety and tolerability of just a single dose of the drug and measuring its ability to lower that harmful protein level. If successful, it is the necessary first step toward larger, multi-dose studies.

Funding from NIH grants and private community donations are behind this research and this trial, which is why awareness and generating financial support continue to be so important.

Here is a link to the full announcement from the Broad Institute: https://www.broadinstitute.org/news/clinical-trial-prion-disease-drug-candidate-begins-enrolling-participants

And you can see an overview of other drug development research here: https://cjdfoundation.org/drug-development/

It’s the first time the potential treatment, a small interfering RNA targeting the prion protein, is being tested in humans.

04/10/2026

Six months from today, we will gather to honor those impacted, raise money for research, and take another step toward building a community of support in Indiana.

And you can officially register to walk, create a personal fundraising goal, and be part of Strides for CJD—Central Indiana. It's never too early to start making a difference.

Here is your destination for details and registration: https://bit.ly/IndianaStrides

02/28/2026

Today is Rare Disease Day 💜 a day to join with others around the world to honor the memory of our loved ones and to advocate for global awareness and education. CJD affects 400 to 500 people in the United States every year. As a rare, rapid, degenerative dementia—continued research, awareness, advocacy, and funding is truly needed to find treatment and a cure. The The Creutzfeldt-Jakob Disease (CJD) Foundation, Inc. plays a critical role in all of this work.

In January, I (Adam) had the opportunity to join a podcast to share about my late wife Stacey and our family's experience with CJD. This is just one of many ways we are working to raise awareness and drive support and funding for research.

If you haven't listened to the podcast conversation, take time to listen today on Rare Disease Day, and then share it with your own community. This will help us build awareness and then create support for our Strides for CJD event on October 10, 2026.

In this emotionally charged episode of 'The Healing Journey,' the host delves into a deeply personal discussion about Creutzfeldt-Jakob Disease (CJD) with gu...

02/27/2026

02/15/2026

Save the Date!

On October 10, 2026, we will come together for a family-friendly morning of walking, remembering, and connecting. More details to come — but for now, get this event on your calendar!