‘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).
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