A support group can provide great comfort and stress relief. It is good to know you’re not alone, and you often learn things from other caregivers. The best groups for CJD caregivers tend to be groups focused on CJD that provide a safe and trusting environment, clear structure and a facilitator. That said, try the groups that appeal to you and fit your needs. You might want to talk to the facilitator or leader before the first meeting.
While we will list all the support groups we can find, we may miss a few. If there is not one listed here that is near you, we recommend that you check with a social worker at your hospital, adult day care centers or your faith-based organization.
CJD Voice is a grass roots organization of individuals formed in 1997 to support families during and after a CJD crisis. They provide an email discussion group, moderated chat room and digital forums where members can share about CJD and related issues.
CJD Voice
www.cjdvoice.org
CJD Insight was created by Deana Simpson, a registered nurse, who lost her mother to the genetic form of CJD. While this is mostly an informative site, she provides a link for you to email her.
CJD Insight
cjdinsight@comcast.net
CJD Aware! was formed in 2002 after the death of the founder's mother, Sara Brom, from the classic (sporadic) form of Creutzfeldt-Jakob disease (CJD). This site provides information about CJD.
CJD Aware!
2527 South Carrollton Ave.
New Orleans, Louisiana 70118-3013
info@cjdaware.com
www.cjdaware.com
Tel: 504-861-4627
The National Family Caregivers Association (NFCA) provides education, support and advocacy for caregivers across diagnoses, relationships and life stages. They maintain a network of current or former family caregivers at state and local levels across the US. To join NFCA's Family Caregiver Community, click here.
National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, Maryland 20895-3944
info@thefamilycaregiver.org
www.thefamilycaregiver.org
Tel: 301-942-6430; 800-896-3650
Fax: 301-942-2302
Family Caregiver Alliance (FCA) offers a wide array of services and publications based on caregiver needs at the local, state and national levels. For state-by-state help for family caregivers, click here. They also maintain Link2Care, a password protected online information and support program for California caregivers of an adult with dementia.
Family Caregiver Alliance/ National Center on Caregiving
180 Montgomery Street, Suite 1100
San Francisco, California 94104
info@caregiver.org
www.caregiver.org; Link2Care
Tel: 800-445-8106; 415-434-3388
Fax: 415-434-3508
Well Spouse is a national, not-for-profit membership organization which gives support to wives, husbands, and partners of the chronically ill and/or disabled. Well Spouse support groups meet monthly. To contact a support group near you or to learn how to start a group, please click here.
Well Spouse Association
63 West Main Street, Suite H
Freehold, New Jersey 07728
info@wellspouse.org
www.wellspouse.org
Tel: 800-838-0879; 732-577-8899
Fax: 732-577-8644
The ARCH National Respite Network, sponsored by the Chapel Hill Training-Outreach Project, includes a search function to help caregivers and professionals locate respite services in their community and advocacy for respite in policy and programs at the national, state and local levels.
ARCH National Respite Network
Chapel Hill Training-Outreach Project, Inc.
800 Eastowne Drive, Suite 105
Chapel Hill, North Carolina 27514
chtop.org/ARCH.html
Tel: 919-490-5577
Fax: 919-490-4905
DailyStrength.org provides free, anonymous support groups for people to share their advice, treatment experiences and support. To join the CJD group, click here.
DailyStrength.org
12121 Wilshire Boulevard, Suite 1100
Los Angeles, California 90025
help@dailystrength.org
dailystrength.org
Caregiver Media Group provides information, support and guidance for family and professional caregivers. They produce Today's Caregiver magazine, the "Sharing Wisdom Caregivers’ Conferences" and the caregiver.com website which includes newsletters, online discussion lists, back issues of Today's Caregiver magazine, chat rooms and an online store.
caregiver.com
3005 Greene Street
Hollywood, Florida 33020
info@caregiver.com
caregiver.com
Tel: 800-829-2734; 954-893-0550
Fax: 954-893-1779
The CJD Support Network was established in 1995 by relatives of people who have died with CJD. It is a patient support group providing help and support for people with all strains of Creutzfeldt-Jakob disease, their caregivers and concerned professionals.
CJD Support Network
PO Box 346
Market Drayton
Shropshire
TF9 4WN United Kingdom
www.cjdsupport.net
Tel: 01630 673993 (admin)
HelpLine: 1630 673973 (England)
The Creutzfeldt-Jakob Disease (CJD) Foundation provides a national toll free HelpLine at 800-659-1991 for families and concerned healthcare professionals. Calls are answered during work hours Monday-Friday 9:00 am-5:00 pm Eastern Time (ask for Florence or Marisa). You can leave a message at any time, and it will be returned promptly.
Creutzfeldt-Jakob Disease (CJD) Foundation Inc.
PO Box 5312
Akron, Ohio 44334
help@cjdfoundation.org
www.cjdfoundation.org
Tel: 800-659-1991
Fax: 330-668-2474