Rosie's Reef Foundation

05/10/2026

Mother’s Day is not only a day to celebrate our mothers, grandmothers, and friends that are. Whether it’s your mother, grandmother, spouse, or friend, it’s also a day for those of us to remember those we used to say Happy Mother’s Day to. Take this day to remember all the wonderful things these women meant to us and embrace those special moments that we hold dear. We do.
&mima

04/29/2026

Heres my story of my Rosie’s and grandson’s relationship was during her battle with CJD. After giving it to him, I realized that I could make some good out of the story, to comfort and explain loss to other young ones and teach the special relationship they had with their loved one has purpose. My hope is that this will help of some of you with this important message

Oski & Mi-ma is finally out to print. All proceeds go to the Rosie’s Reef Foundation to support organizations doing the hard work in the fight against CJD such as the CJD Foundation and the UCSF Memory & Aging Center.

04/28/2026

Oski & Mi-ma is out to print! The story of a special relationship between a grandchild and his grandmother during the journey through CJD. All proceeds go to the Rosie’s Reef Foundation to support organizations doing the hard work in the fight against CJD such as the CJD Foundation and the UCSF Memory & Aging Center. Written by Glenn Mouritzen and illustrated by Norm Daniel’s. Go to link in bio to pre-order or cut and paste from between the parenthesis
(https://oskiandmima.com)
Stay tuned for more announcements.

04/23/2026

Real progress in the fight against CJD and Prion disease. This is the second treatment going to human trials with three more in clinical studies. Let’s keep the pedal to the metal! 💜💜💜

Please see the Broad Institute of MIT and Harvard's Community Statement on their first-in-human clinical trial to evaluate an investigational drug called PrP-siRNA in patients diagnosed with prion disease.https://cjdfoundation.org/wp-content/uploads/2026/04/NN112-Community-Statement-2026-04-22.pdf

More information on drug development here: https://cjdfoundation.org/drug-development/

04/02/2026

Advocacy works!

If you weren’t able to attend this year’s CJD Foundation Advocacy Day you can still help! We need you to call and email your legislators to ensure CJD stays top of mind. If you would like to write to your representative and/or senators, please contact the CJD Foundation at [email protected] or 800-659-1991 for next steps.

03/17/2026

Terrific 1st steps and progress coming from Ionis in their human trials for treatment of CJD. Expansion of their study without the need for placebo and ION717 is engaging with prion proteins!

Please see Ionis Pharmaceuticals' Community Statement providing an update on Ionis’ clinical trial:

https://cjdfoundation.org/wp-content/uploads/2026/03/Community-Statement-announcing-Regimen-3-added-to-PrProfile-study-FINAL-031726.pdf

10/29/2025

International CJD Awareness Day is coming up on November 12. On this day, the CJD community comes together to take a moment to remember loved ones, educate others about prion diseases, and proudly wear purple to show your support.

YOU have the knowledge to bring awareness to others. Together we can make a difference.

09/18/2025

Strides 4 CJD is just two weeks away and we are closing in on our fun team fundraising goal of $25,000, but still have a ways to go. Each year, Strides for CJD raises money for medical education, family support, and research to one day find a cure. There is currently a treatment in human trials right here in Carlsbad that was made possible thanks to donations to the CJD Foundation, the org behind Strides for CJD. Four other pharmaceutical companies are exploring other treatments. Now’s the time to increase funding to get us closer to a cure and provide hope for many.

Please join us this coming October 4th, we will be participating the in the national Strides for CJD fund raising campaign to raise money for the CJD Foundation, raise awareness about the disease, and support those looking for a cure. Research grants directly funded the CJD Foundation have led to human trials for one treatment and now, a total five pharmaceuticals are pursuing treatments for this disease. With defunding of the CDC and The Nation Prion Disease Surveillance and Pathology Center, donations to this event are even more critical.

Any and all donations are appreciated. The base walk cost covers the expenses for the walk. Please sign up today. Cut and paste the following link between parenthesis to sign up. (https://secure.qgiv.com/event/stridesforcjd2025/team/993497/) We have to do it this way because Meta screening.

Event Details
Date: Saturday, October 4
Location: Shelter Island
2230 Shelter Island Drive
San Diego, CA 92106

Schedule of Events: 8:00 am - 9:00 am: Check In/Registration
9:00 am: Opening Announcements
9:15 am: Walk/Fun Run Begins
10:30 am - 12:30 pm: Bali Hai Brunch*

*The Brunch is an additional cost to the walk and proceeds raised by this event will be donated to the CJD Foundation as well. This event will include a buffet Brunch. Speakers including the return of Dr Christina Sigurdson, of University of California, San Diego and Frank Myers, board member of the CJD Foundaton, to tell us about the importance of the CJD Foundation and how Strides for CJD has a direct impact on research.

The Rosie’s Reef Foundation appreciates any and all support, and welcomes your participation in memory of Rosie Mouritzen and all the others stricken by this disease.