MAC Angels Links and Resources

Information about ALS

These resources provide information about ALS. The first three are particularly comprehensive in terms of information, services and resources. We suggest you check them out first:

Alternative and Off-label ALS Treatments:

PALS COMMUNITY FOR ALS SUPPORT

PATIENT & FAMILY SUPPORT

All of the organizations listed below provide a wealth of information about all aspects of ALS. Anyone whose life is touched by ALS should contact the local chapter of the ALS Association as well as the Muscular Dystrophy Association to learn about local assistance, including transportation, support groups, equipment loans and other local resources that can make things much easier.

Next Step in Care (http://nextstepincare.org/) from the United Hospital Fund provides a comprehensive set of guides and checklists for caregivers that help family caregivers make informed and realistic choices. The guides will help insure that you know your rights, how to manage medication properly, how to manage a trip to the Emergency Room, - in short, prepare you for what may come next. If you or your loved one is transitioning from one care setting to another (say, between a hospital and home, or a rehabilitation facility or long term care facility) this site is a must read.

Care Giving Support and Coordination

To easily organize family and friends, there are some great, free internet tools:

  • Lotsa Helping Hands (http://www.lotsahelpinghands.com/) a free, private, web-based community for organizing friends, family, and colleagues as well as updating everyone as what is going on currently. One can easily coordinate activities and manage volunteers with this intuitive group calendar. It is very similar is MDA’s My Muscle Team (http://www.mdausa.org/myMuscleTeam/). The more volunteers helping out in small ways, the less stress on the immediate family.
  • Caring Bridge (http://www.caringbridge.org) is another free web based service that helps people connected and informed, although it does not offer an interactive calendar feature to help coordinate volunteers who want to assist.
  • The Pathways To Care Program (http://www.wjcs.com/index.php?src=gendocs&ref=PathwaystoCare&categoryjewish%20community) of Westchester Jewish Community Services provides compassionate individual and family counseling, homecare assistance and supportive when people and their loved ones face a life limiting illness in Westchester County. They provide counseling as well as connect families to professionals who can give advice about critical decisions in a variety of areas related to personal, legal, health, insurance and entitlement issues.
  • Founded in 1977, Family Caregiver Alliance (http://caregiver.org/caregiver/jsp/content_node.jsp?nodeid=349) was the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care at home. Long recognized as a pioneer in health services, FCA now offers programs at national, state and local levels to support and sustain caregivers. Their site offers a wealth of information, including tool kits, manuals, and a state by state caregiver resource guide.
  • The National Alliance for Caregiving (http://www.caregiving.org/) was established in 1996, The National Alliance for Caregiving is a non-profit coalition of national organizations focusing on issues of family caregiving. Alliance members include grassroots organizations, professional associations, service organizations, disease-specific organizations, a government agency, and corporations.

    The Alliance was created to conduct research, do policy analysis, develop national programs, increase public awareness of family caregiving issues, work to strengthen state and local caregiving coalitions, and represent the US caregiving community internationally. Recognizing that family caregivers provide important societal and financial contributions toward maintaining the well-being of those they care for, the Alliance's mission is to be the objective national resource on family caregiving with the goal of improving the quality of life for families and care recipients.