CREUTZFELDT-JAKOB DISEASE FOUNDATION HOLDS 4th ANNUAL CONFERENCE

- The Creutzfeldt-Jakob Disease (CJD) Foundation held its 4th annual family conference at the Washington Court Hotel in Washington, D.C, July 7-10, 2006. The foundation brought together families who have been affected by this rare, always fatal, neurological disease. Attendees heard from leading experts and researchers including Dr. Pierluigi Gambetti from the National Prion Disease Pathology Surveillance Center at Case Western in Cleveland, Ohio; Dr. Bernardino Ghetti of Indiana University and President-elect of the International Society of Neuropathology; Dr. Robert Will prominent clinician in the United Kingdom; Dr. David Kocisko, Rocky Mountain Laboratories; Dr.Neil Cashman of Vancover, British Columbia; Dr. Richard Knight, Director of the National CJD Surveillance Unit, UK; Dr. James Sejvar of the Centers for Disease Control and Prevention, Atlanta, GA; the CJD Support Networks from Japan and Australia and other experts from the CDC and NIH, as well as, members of the Foundation’s Board of Directors.

One Hundred and forty family members and scientists met to share research and personal stories of loss due to CJD. Family members also made visits to Capitol Hill to bring awareness to CJD, discuss research and surveillance of the brain disease and food safety.

Creutzfeldt - Jakob disease is a prion disease which is a group of rare, invariably fatal brain disorders which occur both in humans and certain animals. They first came to public attention in the mid 1980s in the form of the BSE epidemic in the United Kingdom BSE (bovine spongiform encephalopathy) also known as “mad cow disease” is a prion disease in cattle. Tissue from infected animals may have contaminated cattle feed, leading to the silent spread of the BSE epidemic. In humans the best known of the prion diseases is CJD which reportedly affects 250-300 people a year in the United States. Statistics indicate that 1 in 9000 over the age of 55 will be affected. Most of the cases are “sporadic” CJD (sCJD), occurring for no, as yet, known reason while some are the familial form.

In response to the recent discovery of 3 cows testing positive for BSE in the United States, Florence Kranitz, President of the CJD Foundation said, “By eating beef that has not been rigorously tested, the American population faces an ominous risk. It is important to keep the food supply safe to prevent individuals from contacting the deadly human form of “mad cow disease”, called variant Creutzfeldt - Jakob disease (vCJD). Only through strict enforcement of a rigid and transparent animal surveillance system can we realistically expect to protect the U.S. population from this 100% fatal, ugly, brain eating disease.” Kranitz added the CJD Foundation feels it is extremely important to continue the process of educating families, healthcare providers, researchers and political leaders on the devastation of the disease, as well as, the progress being made towards identifying a cure for CJD.”

The CJD Foundation proudly unveiled its Medical Education DVD, “Confronting CJD and Other Prion Disorders.” The purpose of the DVD is to educate medical professionals about the prion disease and the care of patients and families affected by CJD. It will be presented during Grand Rounds at many hospitals/teaching institutions across the country.

The Creutzfeldt-Jakob Disease Foundation (CJD) is a not for profit organization providing support and advocacy work on behalf of patients and families affected by this rare, always fatal brain wasting disease. Anyone needing information regarding CJD is encouraged to contact the Foundation at 1-800-659-1991 or through the website at www.cjdfoundation.org.