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University of Pittsburgh

Additional Resources

UPMC Resources:

University of Pittsburgh Medical Center (UPMC) Neurology and Neurosurgery Services Through our wide-ranging health care network of 20 hospitals, hundreds of doctors' offices, and numerous specialized treatment and surgery centers, UPMC offers many programs and services relating to neurology. For more information about neurology services at UPMC, to find a doctor, or to make an appointment, call 412-647-UPMC (8762) or toll-free at 1-800-533-UPMC (8762). Read More >

University of Pittsburgh Medical Center (UPMC) Center for Assistive Technology (CAT) can provide ALS patients with a bridge to independence and an opportunity to live life to its fullest through assistive devices. Specialized clinics include those involving Wheelchair evaluation, Augmentative communication (computerized speech devices), and other computerized assistive devices. Read More >

Human Engineering Research Laboratories, VA Pittsburgh Healthcare System. Research projects, information on adapting to daily life as a wheelchair user. Read More >

University of Pittsburgh Department of Physical Medicine & Rehabilitation We are worldwide leader of research and development that increases the mobility and function of people with disabilities. Our Mission is to continuously improve the mobility and function of people with disabilities through advanced engineering in clinical research and medical rehabilitation. Read More >

Local/Community Resources:

The Muscular Dystrophy Association (MDA) is a world leader in fighting ALS. The ALS Division of MDA offers a comprehensive range of services and joins in the search for treatments and a cure. Read More >

The ALS Association Western Pennsylvania and West Virginia Chapter The Western Pennsylvania Chapter focuses primarily on helping local patients and families live with ALS while the National Office focuses primarily on research and advocacy. The Chapter supports the National Office through revenue sharing and research contributions. The National Office supports the Chapters by providing up-to-date information and materials. Read More >

Family Hospice and Palliative Care
The mission of Family Hospice and Palliative Care is to provide compassionate, quality comfort care that enhances the lives of people with life-limiting illness and their families. Read More >

Assisted Living http://www.assistedliving.com/pennsylvania/

Forbes Hospice's team of caregivers offers a compassionate, loving approach to meeting the needs of patients and families. Read More >

Knopp Biosciences Inc. is a biotechnology company with a mission to accelerate the diagnosis and improve the treatment of ALS. Read More >

Living Will http://www.upmc.com/patients-visitors/patient-info/advance-directives/Documents/pa-advanced-directive.PDF

National Resources:

The ALS Association (ALSA) is a national not-for-profit health organization providing help to those facing the disease through research, patient and community services, public education and advocacy. Read More >

The National Institute of Neurological Disorders and Stroke (NINDS) conducts and supports research on brain and nervous system disorders. NINDS is one of many research centers and institutes that comprise the National Institutes of Health (NIH), which is an agency of the Public Health Service within the U.S. Department of Health and Human Services. Read More >

Project A.L.S. is a not-for-profit organization dedicated to finding and funding treatment and a cure for ALS. Read More >

Patients Like Me is an online community committed to making a difference for patients and their health. Read More >

The National Family Caregivers Association educates, supports, empowers and speaks up for the more than 50 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers' lives by removing barriers to health and well being. Read More >

The National Alliance for Caregiving is dedicated to providing support to family caregivers and the professionals who help them and to increasing public awareness of issues facing family caregivers. Read More >

Well Spouse Foundation . . When one is sick . . two need help! Read More >

National Association for Home Care (NAHC) is the nation's largest trade association representing the interests and concerns of home care agencies, hospices, home care aide organizations, and medical equipment suppliers. Simply put, NAHC is the one organization dedicated to making home care and hospice providers lives easier. Read More >

The National Hospice and Palliative Care Organization (NHPCO) is the largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. The organization is committed to improving end-of-life care and expanding access to hospice care with the goal of profoundly enhancing quality of life for people dying in America and their loved ones. Read More >

The National Respite Locator Service helps parents, caregivers, and professionals find respite services in their state and local area to match their specific needs. Read More >

Adult Day Care Centers are senior care locations that are open during normal business hours and provide various care services, supervision and social interaction for the elderly. Seniors generally attend adult day care on a scheduled basis which can provide relief to caretakers, such as family members or caregivers. Read More >

Home Health Care Agencies. Home health care companies offer a wide range of skilled medical services such as nursing care, physical therapy and occupational therapy from qualified medical professionals in addition to various services from home health aides. Other home care companies might offer assistance with daily activities, such as bathing and eating. Home care services are conducted in the comfort of your home. HomeHealthCareAgencies.com has compiled extensive home health care information such as licensing requirements and state contacts. Read More >

Skilled Nursing Facilities, or nursing homes, are a healthcare option for patients that are in need of constant medical attention. Nursing homes provide the skilled nursing care, appropriate medical monitoring and assistance with activities of daily living that many elderly persons require as they age and suffer various health setbacks.

Medical Alert Systems may be very helpful and lifesaving especially in those patients who are at risk of falling and who have impaired communication. Read More >

 

Veterans can obtain assistance navigating the VA Healthcare System via the Paralyzed Veterans of America. They help patients understand the utility of the VA system and help with form completion etc. The local number for that organization is 412-395-6255. The current advocate is Kurtt Robinson.

 

Department of Veteran’s Affairs ALS has been listed as a disease entitled to presumptive service connection after military service. This means that if a service member is diagnosed with ALS his or her condition will be presumed to have occurred during or been aggravated by military service and as such be entitled to service connection and full benefits.

The VA has established ALS as a possible compensable illness. For additional information call 1-800-827-1000.

Veterans and their caregivers can write to request: Federal Benefits for Veterans and Dependents brochure (IS-1 Fact sheet) at: Superintendent of Documents, U.S. Government Printing Office, Washington, DC 20420; $4.00. This and other information on eligibility for benefits may be obtained from local Veterans Affairs Regional office or V.A. Medical Center, in your local phone directory under U. S. Government, or by contacting the Department of Veteran’s Affairs Headquarters at 810 Vermont Ave., N.W., Washington, DC 20420. The Veteran’s Administration also has a national registry. This provides the VA a way to inform veterans with ALS about research studies for which they are eligible. For more information call 877/342-5257 or go online at ALS@med.va.gov.

Required application form is available here:
· Service Connection: http://www.vba.va.gov/pubs/forms/VBA-21-526-ARE.pdf Or call 1-877-222-VETS (8387).