Resources for ALS Patients and Caregivers

This section contains helpful links to contact information for national and community organizations, support groups, media, and other resources that the ALS patient and/or caregiver may wish to access over the course of the patient’s disease.

ALS Support Groups and Assistance

ALS is a disease that changes the lives of patients and their family members. Families confronted with a diagnosis of ALS may experience anxiety, confusion, and stress. The following patient advocate organizations and social service agencies can suggest ways to cope with the physical and emotional challenges of ALS and provide information, assistance, and emotional support to patients, families, and caregivers. Travel information for people with ALS is also included. Click on the following links for more information

• Caregiver/Family
• Home Care/Hospice
• Travel Resources

Caregiver/Family

The National Caregivers Association offers support and education for the 20 to 30 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. It recently conducted a member survey to determine the top concerns of caregivers, distributing information to members in the form of reports and through its newsletter. In addition, a peer-to-peer networking program helps families dealing with the same disease or with similar circumstances, 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
http://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 Foundation was founded in 1988 with 10 members. It now has more than 2,600 members and 70 support groups that offer support to partners of terminally ill, chronically ill, or disabled persons. Some members are caring for spouses with ALS. Regional support groups, patient networking opportunities, and a newsletter help members cope with the difficulties they face as caregivers. Support groups usually meet twice a month, either morning or evening, to share experiences, discuss coping skills, and provide emotional support. An annual conference provides workshops on topics such as dealing with children's feelings, the ethics of refusing life support, legal issues, and other topics of interest to members.

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
http://www.wellspouse.org

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
http://www.archrespite.org

A valuable resource for family members of ALS patients, the Family Caregiver Alliance specializes 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; (800) 445-8106 (in California)
http://www.caregiver.org

Home Care/Hospice

Travel Resources

• SATH is a volunteer, non-profit that has resumed responsibility in addressing the needs of the disabled traveler.
  
  The Society for Accessible Travel & Hospitality (SATH)
  347 Fifth Ave, Suite 605
  New York, NY 10016
  Tel: 212-447-SATH (7284)
  Fax: 212-447-1928
  http://www.sath.org
  
  
• AMTRAK has special cars adapted for wheelchair travelers. Reservations should be made well in advance.
  
  AMTRAK
  Phone: (800) USA-RAIL (872-7245)
  http://www.amtrak.com
  
  
• Flying Wheels Travel arranges travel plans for people with disabilities. The organization is familiar with accessible hotels, motels, resorts, cruise ships, etc.
  
  Flying Wheels Travel, Inc.
  143 W. Bridge Street
  Owatonna, MN 55060
  Phone: (507)451-5005
  Fax: (507) 451-1685
  http://www.flyingwheelstravel.com/
  
  
• Perpetual Travel provides information and links to travel websites for people with disabilities.
  http://perpetualtravel.com/rtw/rtwdisabled.html
  
  
• Mobility International USA is an organization dedicated to empowering people with all types of physical disabilities to realize their human rights through international exchange and international development
  
  
• Travelin' Talk is an information network providing assistance to disabled travelers. Travelin' Talk Network
  
  
• Access-Able Travel provides travel resources for people with special needs. Access-Able Travel Source
  
  

Books

The following titles are recommended reading for ALS patients, their family members, and caregivers. Books to help plan a trip for travelers with disabilities are also included.