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:

 

Muscular Dystrophy Association

The ALS Association

The ALS Society of Canada

 

ALS Therapy Development Institute

International Alliance of ALS/MND Associations

National Institute of Neurological Disorders

The Robert Packard Center for ALS Research

World Federation of Neurology/ALS

 

 Alternative and Off-label ALS Treatments:

ALSUntangled

 

 

pALS  Community for ALS Support

Patients Like Me

ALS FORUMS - A Support Community

 

 

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.

 

Muscular Dystrophy Association The ALS Association

 

Next Step in Care 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:

 

 

Lots a Helping Hands 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 . The more volunteers helping out in small ways, the less stress on the immediate family.

 

Caring Bridge 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 of Westchester Jewish Community Services provides compassionate individual and family counseling, home-care 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.

 

 

Tissue Donation

The Blazeman Foundation for ALS and the NICHD Brain and Tissue Bank have joined efforts to speed research on ALS (Amyotrophic Lateral Sclerosis, commonly referred to as Lou Gehrig’s Disease). The study of post-mortem tissue from individuals with ALS is critical to finding the cause of ALS. If you have decided to become a potential tissue donor, you are encouraged to register with the NICHD Brain and Tissue Bank. Pre-registration allows for speedy recovery of tissue. Time is critical for the recovery of tissue and should be completed within 24 hours after death.

 

 

 

 

 

ALS Association Support Group  info

 

NEW YORK - Hudson Valley, NY

First Tuesday of every month

Ambulatory Surgery Center

 200 Westage Business Center,

Bldg. C – 3rd floor Fishkill, NY

Contact - Helen Mayer, RN

Phone: (845) 520-0952

Visit our website for more information

 

Westchester County / White Plains

Second Tuesday of every month

 

Burke Rehabilitation Center

785 Mamaroneck Avenue,

White Plains, NY

Main Hospital, Bldg. 7, 1st Floor,

Conference Room G-41

Contact - Helen Mayer, RN

Phone: (845) 520-0952

Visit our website for more information

 

NEW YORK - MANHATTAN

3rd Tuesday of every month

Phillips Ambulatory Care Center (Beth Israel)

Jody Wiesel, PhD

Phone: (917) 699-9751

wiesel@als-ny.org

Visit our website for more information

 

NEW JERSEY - Northern NJ / Saddle Brook

First Thursday of every month

Kessler Institute for Rehabilitation

300 Market Street, Saddle Brook, NJ

Contact - Debbie Schlossberg, LMSW

& Mary Ann Mertz, RN

Phone: (732) 710-8832

Visit our website for more information

 

NEW JERSEY - CENTRAL / NEW BRUNSWICK

3rd Saturday of every month

Robert Wood Johnson University Hospital

Medical Education Building, Rm. 108A

180 Somerset Street, New Brunswick, NJ

Contact - Debbie Schlossberg, LMSW

& Mary Ann Mertz, RN

Phone: (732) 710-8832

schlossberg@als-ny.org

Visit our website for more information

 

CONNECTICUT

Fairfield Area Support Group

4th Tuesday of every month from

6:00 p.m. to 7:30 p.m.

The Carolton Chronic and Convalescent Hospital

400 Mill Plain Road Fairfield, CT 06824

Visit our website for more information

 

Caregivers Only Support Group

2nd Tuesday of every month from

5:30 p.m. to 7:00 p.m.

The ALS Association Connecticut Chapter Office

4 Oxford Road, Unit D-4 Milford, CT 06460

Visit our website for more information

 

Hospital For Special Care ALS Support Group

3rd Wednesday of every month from

2:00 p.m. to 3:30 p.m.

Lower Level Conference Room

2150 Corbin Avenue New Britain, CT 06053

Visit our website for more information

 

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