Abstract
The Creutzfeldt-Jakob Disease (CJD) Foundation was formed in 1993 in Miami, Florida by two women who each lost a loved one to this terrible disease. They were instrumental in designing the Foundation’s mission, which stresses a strong dedication to providing support and information to all affected families who turn to us for help. This mission continues to guide the Foundation’s work today.
In 2001 a newly formed task force in Akron, Ohio, began working with the CJD Foundation as a way to pay tribute to a dear friend they had recently lost to CJD. A year later the task force was invited to take over the reins and the CJD Foundation was moved to Akron. At this time a new Medical Director and Board of Directors were appointed, an aggressive agenda was adopted and many new programs were introduced. Among the first, in 2002, with a donated infrastructure, a toll free HelpLine was introduced which continues to act as the true heartbeat and driving force of the Foundation’s work today. HelpLine statistics were first collected in 2003 and showed that the Foundation through 2011 had received a total of 7,926 HelpLine calls, reporting 2,470 new CJD cases in total, or 274 cases per year (see Note below). It was a surprise to discover the HelpLine’s toll free number was also accessible to families all over the world as noted when a call was received from a family in China! Through conversations with families, many gaps in patient care were identified, including, among others, the desperation experienced by many families who had to helplessly watch a loved one rapidly deteriorate without a presumptive diagnosis, the often unclear or conflicting guidelines about patient care for families and healthcare professionals, and the final insult many families still face when their loved one is denied the dignity of a respectful funeral service and/or burial.
With the help of a grant from the Centers for Disease Control and Prevention and the advice and participation of our Medical Director, Dr. Pierluigi Gambetti, as well as other prion disease experts, the CJD Foundation produced three educational DVDs, one aimed at physicians, one at infection control and healthcare professionals, and one for funeral directors and embalmers. Each DVD contains interviews with experts and family members and is utilized to conduct educational programs, including presentations at Grand Round meetings, infection control seminars and in-service meetings and state and national meetings for funeral directors and embalmers. The Foundation distributes the DVD’s free of charge and continues to conduct mass mailings to medical libraries, hospitals and funeral directors and embalmers associations in all 50 states.
Perhaps one of the most surprisingly beneficial programs the CJD Foundation developed by listening to the needs of the families was an annual family conference, the first of which was held in July 2002 in Washington DC. At this conference families were invited to learn about the latest prion disease research from the scientists who were actually carrying out the work. Presenters were asked to simplify research description and jargon as much as possible in order to help the attending families understand their presentations (in many cases they succeeded!). Directors of prion disease surveillance centers around the world were also invited to discuss their work and their challenges. It was expected that the families might react emotionally to this experience but it turned out to be emotional for many of the researchers as well. Some of them had never met relatives of patients and now they were addressing an entire room of interested, respectful and grateful family members.
The Annual CJD Foundation Family Conference has seen its attendance increase and now includes both national and international family members and scientists. Four years ago PrioNet Canada and the National Prion Disease Pathology Surveillance Center joined the CJD Foundation in sponsoring this conference (). At this same conference the Foundation was instrumental in helping form the CJD International Support Alliance, which today is comprised of patient/family support organizations representing nine countries. The purpose of the Alliance is to act together as a global coalition providing referrals, information and support to affected families worldwide and to speak out with one voice wherever and whenever relevant issues arise ().
Figure 1. Conference Partners, from left to right: Dr. Neil Cashman, Scientific Director, PrioNet Canada; Dr. Pierluigi Gambetti, Director National Prion Disease Pathology Surveillance Center; Florence Kranitz, President The CJD Foundation.
Figure 2. CJD International Support Alliance.
Each year, the conference offers a weekend of hopeful research presentations including reports from the researchers who have been recipients of CJD Foundation family grants, a day of relevant workshops (which has grown from a handful of attendees around a conference table to what is now a large filled-to-capacity lecture room) and the opportunity to visit Capitol Hill to meet with individual US. Congressional Representatives to educate them about prion diseases and the issues our community cares so deeply about.
The families attending this conference are, in most cases, total strangers to one another. Year after year, we have seen that in this carefully monitored safe environment they have the opportunity to interact with a room full of family members who have experienced the same unique and devastating loss. This often leads to an important first step in healing and, in many instances, lasting friendships ().
Figure 3. CJD Family Conference Welcome Reception.
The 2012 CJD Foundation Family Conference will be held July 13–15 at the Washington Court Hotel in Washington DC
After the first conference, the CJD Foundation considered making it a one-time event because it appeared to be very difficult for families to sit in that large ballroom and listen to researchers talk about a disease so universally hated. The decision was made to continue but to carefully monitor the results over the next few years. Now, as the Conference approaches its tenth anniversary, the decision to continue proved to be immensely fruitful. The format has stayed constant but, in response to attendee’s suggestions, moving round tables were initiated to allow more interaction; workshops were expanded and the International Alliance members were asked to report on their work. Attendance has grown significantly each year and, as an additional endorsement, the CJD Foundation’s Annual Family Conference has become the template for similar meetings held around the world.
The work of the CJD Foundation and its dedication to remain open to new ideas and to pattern all programs around the needs of affected families will, hopefully, continue to provide the tools necessary for them to begin healing and help them in their struggle to develop a renewed sense of purpose and hope.
Note
The CJD Foundation, while acting as a referral to the National Prion Disease Pathology Surveillance Center, is not a reporting agency. Each time we receive a call from a new family member reporting a loved one diagnosed with a suspected prion disease we add them to our records as a possible new case. When an autopsy is performed we follow up to determine the final diagnosis, when no autopsy is performed we attempt to ascertain as much information as possible prior to adding the patient to our statistics as a new case.