From Joaquín Castilla-
“It is a pleasure to inform you that we have successfully celebrated the II Spanish Family meeting for the CJD/FFI affected families. It has been very emotive and exciting according to all the compliments received. The meeting came out on three of the best television networks in the country! This is great for our Spanish Association!
We met 102 persons (see in Spanish the program: Spanish Association Conference Program).”
We are very excited to announce the launch of a patient registry for patients, family members, those at risk and those who would like to assist by being a control.
Please watch the video by Eric Minikel and Sonia Valladh announcing the launch of the prion registry at the CJD Foundation conference on 16th July 2017 in Washington DC USA . This is a collaborative initiative supported by the CJD Foundation USA and the CJD International Support Alliance of which Deana Simpson and Suzanne Solvyns are co-chairs.
Announcing prionregistry.org an online portal to connect patients & people at-risk with opportunities to participate in prion research.
From Prion Alliance in Boston, Massachusetts:
Today we are proud to launch a new clinical research study with collaborators at Massachusetts General Hospital!
This study, funded by your donations to Prion Alliance, is now recruiting people at risk for genetic prion disease, and controls, to donate cerebrospinal fluid for studies of biomarkers in prion disease.
Learn more and participate: Prion Alliance sponsors MGH research study
This is just brilliant and comes from a lady who is a clinician and also a prion disease researcher and plays the fiddler like you would not believe. Dr. Valerie Sim is also a member of the Friends and Advisors Group of the CJD International Support Alliance and Medical Director of the Canadian CJD Association so is dedicated to assisting patient associations and CJD patients and families. This is the calibre of researchers we are so lucky to know are working hard to find a treatment or cure for this devastating disease called CJD or prion disease.
This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at https://www.ted.com/tedx
We thank Professor Richard Knight and Professor Jean Manson for the opportunity given to the CJD International Support Alliance (CJDISA) to present to the scientific audience on behalf of the patients, families and those at risk of CJD and other prion diseases. Being able to bring the voices and faces of those affected around the world to the 350 researchers and experts attending has become an important part of this annual prion scientific conference.
We would like to thank the many personally affected who contributed to this presentation and acknowledge those whose dedication and passion has led to the development of 15 member associations covering 14 countries who offer support and assistance to all affected by prion disease around the world.
The CJDISA presentation is now posted on the CJDISA website and we will have lay summaries of the scientific presentations that members of our Friends and Advisors have kindly offered to provide to help families to understand the current prion research happening around the world.
- CJDISA presentation
- The lay summary: PRION 2017 Summary for CJDISA