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 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
‘A global collaboration supporting patients, their families and those at increased risk of developing prion disease’.
Presented by Deana Simpson and Suzanne Solvyns, co-chairs, The CJD International Support Alliance (CJDISA).
On July 8-10, 2016, the CJD Foundation and the National Prion Disease Pathology Surveillance Center will host the 2016 CJD Foundation Family Conference at the Washington Court Hotel, Washington, DC. The conference will feature presentations by grant recipients and other researchers, family workshops, roundtable discussions, and updates from the CDC and NPDPSC.
For information, visit www.CJDFoundation.org or go to:
2016 CJD Foundation Family Conference Information
2016 CJD Foundation Family Conference Invitation
2016 CJD Foundation Family Conference Registration Form
MADRID, 12 (EUROPA PRESS)
The Spanish Association of the disease of Creutzfeldt-Jakob (CJD) has organized this Saturday the I meeting of families affected by prion diseases, a meeting first in Europe, in the Hotel Novotel Madrid Puente de la Paz, to help the families of the patients, promote unity among them, inform those affected and give visibility to this medical condition.
“This meeting, which has been a huge effort, is organized altruistically to help families. “It is important to give visibility to this type of rare diseases, since one or two people of every million population suffers”, explained the head of the laboratory of Proteomics of CIC BioGUNE and creator of the Association, doctor Joaquín Castilla, in an interview with Reuters. About 70 cases of prion diseases are diagnosed per year in Spain.
During the event several lectures and presentations are held to share the personal experiences of the families concerned. It also boasts the presence of leading experts in the study and research of prion diseases, as the own Castile or neurologist Adolfo López de Munain.
“We want to help families informing them about such diseases, explaining the palliative treatments that are conducted with talks. “In addition, we wanted to share experiences and information on prion diseases, providing among all new ideas to improve the situation”, said Castilla.
Prion or encelopatias spongiform diseases are life-threatening ailments for which there is no cure or effective treatment. Considered group of Graves disease, these include Creutzfeldt-Jakob disease, the Fatal familial insomnia or Gerstmann-Straussker-Scheunjer syndrome.
They can be inherited or genetic diseases. In the case of hereditary, if one parent has a dominant gene there is a chance of 50 percent of newborns suffering from a prion disease, as explained by the expert.
TOGETHER WITH ISABEL GEMIO FOUNDATION
Type neurodegenerative, progresses very quickly, “with a six-month median survival,” Although some cases may be 3 months or 2 years, it has pointed out Castilla. It usually affects individuals around age 60, although in the case of the hereditary pueden dar from age 30 to age 60-70. There are also exceptions, as the case of a 12 year old Spanish girl, to which four years ago was detected of Creutzfeldt-Jakob disease and became the youngest case worldwide.
In addition to meeting this Saturday, the Spanish Association of the disease of Creutzfeldt-Jakob (CJD) tomorrow will be with Isabel Gemio Foundation, which is holding a charity weekend to raise money to investigate and give visibility to rare diseases.
Spanish Family Meeting Programa
To bring the best review of Prion 2015 in Colorado last month, Deana Simpson and I, on behalf of the CJD International Support Alliance, asked Sonia Vallabh and Eric Minikel to share their blog with you all.
Personally affected by prion disease Sonia and Eric have become prion researchers and their passion, dedication and hard work towards finding a cure provides a lot of hope for other families.
Prion Alliance Blog