Families who are caregiving for a loved one with prion disease, or who have lost a loved one in the past, or are awaiting test results, have many questions and concerns. To assist these family members, the CJD Foundation hosts a number of support group options:
Teleconference Support Group - Several times each year, the CJD Foundation hosts a dial-in Q&A session for families affected by prion disease. Attendees include those who are currently caregiving, as well as those who lost a family member to prion disease in the past. The sessions are moderated by the Foundation staff and led by our Medical Director. Participants are asked what issues each call should cover. Topics addressed often include caregiving, testing and diagnosis, transmissibility and infection control, number of cases occurring in the U.S., funeral concerns, and bereavement. Questions are answered by a doctor and Foundation staff. In addition, participants share their experiences and suggestions and provide mutual support. At times, specialized calls are held for either Sporadic or Genetic groups. The Foundation also hosts a Teleconference Speaker Series, with CJD experts sharing updates about their work in the field, and answering questions from family members.
To check out our upcoming Teleconference Support Groups, click here. To receive the dial-in number, please call 1-800-659-1991 or email firstname.lastname@example.org. For hear recordings of past Teleconference Support Groups, click here.
New York City Support Group - The CJD Foundation hosts a monthly support group on the East Side of Manhattan, typically held on the first Monday evening of the month. Participants who are caregiving or have lost a loved one to prion disease, share their insights and experience and provide mutual support. To make your reservation and for venue info, call Lori at 1-800-659-1991 or email her at email@example.com.
For a current listing of our New York City Support Group dates, check out our Upcoming Events page.
Family Workshops: Local - When the CJD Foundation hosts medical education sessions in a city, we often hold a Family Workshop in that same location. The CJD expert who provided medical education also joins us for a Q&A discussion with family members in the area, moderated by staff of the Foundation.
To learn about upcoming Family Workshops, click here.
Atlanta Family Workshop, 2015
The CJD Foundation has hosted Family Workshops in the following cities:
2016: Minneapolis, Minnesota; New York City; Denver, Colorado; Tucson, Arizona; Southern California; and Birmingham, Alabama
2015: Miami, Florida; Indianapolis, Indiana; Raleigh, North Carolina; Murray, Utah; Atlanta, Georgia; and New York City
2014: Pittsburgh, Pennsylvania and Austin, Texas
2013: Cleveland, Ohio; Georgetown in District of Columbia; Nashville, Tennessee; New York City; and Madison, Wisconsin
2012: Atlanta, Georgia and St. Louis, Missouri
2011: Eugene, Oregon and Portland, Maine
Minneapolis Family Workshop, 2015
Family Workshops - Annual Conference - Each July, at the start of the CJD Foundation Family Conference in Washington, D.C., the Foundation hosts Family Workshops for those affected by sporadic and genetic forms of prion disease. To find out more, click here.
HelpLine - CJD Foundation staff are trained to provide one-on-one support to families who are seeking a diagnosis, are caregiving, or are grieving a loss to CJD. HelpLine staff can connect you to resources and experts, or connect you to another family who has had a similar experience and is willing to talk one-on-one. Call our toll-free HelpLine at 1-800-659-1991.