The following advocate organizations and social service agencies can suggest ways to cope with the physical and emotional challenges of caring for someone with ALS and can provide both information and assistance.
The National Family Caregivers Association offers support and education for the more than 50 million people throughout the United States who provide care for a loved one. The association does not specialize in nervous system disorders, but provides caregiver support for a variety of conditions, including ALS. In addition, a peer-to-peer networking program helps families dealing with the same disease or similar circumstance, establish contact with each other. In this way, families can share experiences and exchange valuable information.
National Family Caregivers Association (NFCA)
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895-3944
Phone: (800) 896-3650 or (301) 942-6430
Fax: (301) 942-2302
www.nfcacares.org
The National Alliance for Caregiving (NAC) is a nonprofit group of national organizations giving support to family caregivers and the healthcare professionals who help them, and increasing public awareness of issues facing family caregivers. NAC strives to be the objective national resource on family caregiving with the goal of improving the quality of life for families and care recipients. NAC members include grassroots organizations, professional associations, service organizations, disease-specific organizations, a government agency, and corporations.
National Alliance for Caregiving (NAC)
4720 Montgomery Lane, 5th Floor
Bethesda, MD 20814
www.caregiving.org
The Well Spouse Association 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. Here, members can share their thoughts and feelings openly with others facing similar circumstances in a supportive, non-judgmental environment. Well Spouse support groups are also an excellent source for information on a wide-range of practical issues facing spousal caregivers. Well Spouse support groups exist or are being formed in many areas of the country. To contact a support group near you or to learn how to start a group, please go to the "Support Groups" page on the Well Spouse website.
Well Spouse Association (WSA)
63 West Main Street, Suite H
Freehold, NJ 07728
Phone: (800) 838-0879 or (732) 577-8899
Fax: (732) 577-8644
www.wellspouse.org
Hosted by the Chapel Hill Training-Outreach Project, Inc.,
The National Respite Locator Service is a national directory of respite services
that helps caregivers find a respite program in their area. Respite care programs provide
complete patient care, either in a hospital or home setting, and are designed to give family
members a break from caregiving duties. Although some respite programs specialize in certain
diseases and types of care, many have the expertise to provide care for all ALS patients.
The National Respite Locator Service is run by Access to Respite Care and Help (ARCH), an
organization that oversees a nationwide network of respite programs. The ARCH network is
funded by the US Department of Health and Human Services, Administration on Children, Youth
and Families, and Children's Bureau. ARCH can be reached at (919) 490-5577.
Chapel Hill Training-Outreach Project, Inc.
800 Eastowne Drive, Suite 105
Chapel Hill, NC 27514
Phone: (919) 490-5577
Fax: (919) 490-4905
TDD: (919) 490-5577
http://chtop.org/ARCH/National-Respite-Locator.html
The Family Caregiver Alliance® is a valuable resource for family members of ALS patients,
specializing in nervous system disorders, including ALS. In addition to maintaining a network
of resource centers, this organization sponsors education and training workshops, respite
programs, support groups, and conferences. It also conducts consultations on the telephone and
offers information and referrals.
Family Caregiver Alliance® (FCA)
180 Montgomery Street, Suite 1100
San Francisco, CA 94104
Phone: (415) 434-3388 (in California)
(800) 445-8106
www.caregiver.org