- Challenging the Huntington Disease Paradigm: Evaluation of Psychosocial Issues in Persons at-risk for Genetic Prion Disease. Conducted by Case Western Reserve University
- Experimental treatment slows prion disease, extends life of mice. Very exciting research!!! As many of you know we have been communicating regularly with Eric Minikel and Sonia Vallabh and had an update via video at our annual family conference last November. Although Eric and Sonia will not be able to attend our conference again this year for personal reason they will do a video update and we hope to have a representative from Ionis, the pharmaceutical company involved with AOS to also update us. It is hoped that clinical trials may start within 5 years. Our friends at the NIH Rocky Mountain in Hamilton USA are also doing some wonderful research work. Many of you met Byron Caughey a few years ago when he presented on his work with RT-QuIC at an annual conference. I am sure you also remember Dr Cathryn Haigh and Dr Simote Foliaki, who both worked at the Collins Lab in Melbourne before relocating to NIH Rocky Mountain Lab. CJDSGN donations made possible by the generosity of so many of our families assisted both these wonderful researchers while they worked in Australia.
- From National Institute of Allergies and Infectious Diseases– Eyes of CJD Patients Show Evidence of Prions
- From Neurobiology of Disease– Mitochondrial dysfunction in preclinical genetic prion disease: A target for preventive treatment?
- From La Trobe University- ‘Living’ brain slices reveal how nerve cells die
- Prion protein found in skin of Creutzfeldt-Jakob disease patients: NIH/Case Western Reserve University
- Research article regarding Jewish New Year fruit from Neurobiology of Disease Volume 108, Issue null, Pages 140-147:
Continues administration of Nano-PSO significantly increased survival of genetic CJD mice, Orli Binyamin, Guy Keller, Kati Frid, Liraz Larush, Shlomo Magdassi, Ruth Gabizon
- Article from The Times of Israel –Jewish New Year fruit may hold seeds of hope for brain disease sufferers
- Tedx Talk- Dr. Valerie Sim, how her curiosity brought her to discover a new way to bring science to a deeper level.
- A new article on Doxycline which we understand was found to be ineffective in prolonging life with CJD patients after several trails. Deana Simpson and I as co-chairs of the CJD International Support Alliance (CJDISA) will ask Professor Inga Zerr, who is a member of the Friends and Advisors Group of the CJDISA for an update. The full article can be found here: Doxycycline: bringing hope for early sporadic Creutzfeldt-Jakob disease patients
- Paper published by Eric Minikel and Sonia Vallabh: Quantifying prion disease penetrance using large population control cohorts.
Lay Versions: CureFFI.org: Does This Mean I’ll Definitely Get The Disease? CureFFI.org: Q&A on genetic prion disease risk
2015 & prior
- Dr Brian Appleby from Cleveland USA has provided the first summary which discusses the paper mentioned in the article How Do Prions Kill Brain Cells?
- Professor Will has provided the follow comments for which we are very grateful. We hope this helps reduce any misinterpretation surrounding iatrogenic and sporadic CJD while still maintaining an open mind to all research. New research: sporadic type of Creutzfeldt-Jakob disease (mad cow) results from surgery