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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 Foundation
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.
P.O. Box 5312
Akron, Ohio 44334
help@cjdfoundation.org
www.cjdfoundation.org
Tel: 800-659-1991
Fax: 330-668-2474 - CJD Voice
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
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
www.cjdinsight.org - CJD Aware!
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 - National Family Caregivers Association
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/National Center on Caregiving
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 Association
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