A new book is being released on March 21st, 2017 by New York Times bestselling author, Gina Kolata.
The book, “Mercies in Disguise: A Story of Hope. A Family’s Genetic Destiny, and The Science That Rescued Them” tells the story of CJDF Board Member Amanda Baxley Kalinsky and her family, the path to diagnosing the disease (GSS) that affects multiple family members, and how Amanda changed the future of prion disease in her family.
You can purchase this book through Amazon Smile using this link: Amazon Smile CJD Foundation Donation. Amazon will donate 0.5% of the book price to Creutzfeldt-Jacob Disease Foundation Inc.
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
Turin, 15 December 2015
Humanity and participation that Roberto has always put into relationships with people and family members, who called him to speak about their difficult situations, made him a family person, a support and a comfort. He has always been an active person, cheerful, helpful, optimistic, and to speak about him in the past now seems impossible.
For him we will keep the smile, the great vitality and enormous availability.
The AIEnP will remember forever the tenacity and determination with which he helped give birth to the Association: we hope to have learned from him and continue our project with the same enthusiasm he showed.
Dear Roberto, wherever you are, we remember you with great affection and gratitude.
The A.I. En P. is an association founded by a group of people who lived through the experience of a family member suffering from a prion disease and have become aware of the need to address the problem in all appropriate locations and have merged and formed the A. I. En P.
Our main aim is the promotion of scientific research on prion diseases. We aim to provide a viable interface for family members of those affected by prion diseases towards competent institutions
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.
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.