Chapter Services

The ALS Association Keith Worthington Chapter

Chapter Services

The chapter provides a wide range of services for people with ALS, their caregivers, families, and friends as well as professional health care providers throughout our service area - Kansas, Nebraska and Western/Central Missouri.

If you would like to participate in the Programs provided by Patient Services, please fill out the registration form on-line or contact our office at (913) 648-2062 or (800) 878-2062 to register with a Patient Services staff member.

Patient Services Programs

ALSA C.A.R.E.S. provides those with ALS:

Consultation with our professional patient services staff of nurses and masters level social workers is available for patients in their homes, via email and phone throughout the course of the disease.

Adaptation & Equipment Program offers the evaluation of equipment needs and home adaptations that can preserve energy and independence, identification of the best source for recommended devises and adaptations, and a loan pool of primarily used equipment that can be used if other sources are not available.

Resource & Referral lists of medical professionals, service providers and vendors that have experience with ALS are maintained by The Chapter.

Education through materials and programs for patients, care givers and families.

Support groups for ALS patients, families, caregivers, and survivors meet monthly throughout Kansas, Nebraska, and Western Missouri. These groups present the opportunity to learn from professionals in fields related to the management of ALS. As the needs change the latest information is made available. These meetings also provide support and fellowship with others who are experiencing ALS.

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ALSA CENTER OF EXCELLENCE The ALSA Center provides the highest quality of care for ALS patients and families. The Chapter partners with the Center through referrals, financial support, and medical team participation. The Center is located in the new, state-of-the-art Landon Center for Aging at the University of Kansas Medical Center. In a partnership with Best Western, motel stays are provided free of charge to those attending from out of town.

Education and Community Awareness Programs

For Medical Professionals and Health Care Providers, the Chapter provides in-service programs on the latest trends in management of ALS and “Meet the Experts”, periodic presentations by researchers and clinicians specializing in ALS.

For The Board of Directors, Volunteers and Staff, The Annual ALS Association Leadership, Development and Clinical Conference provides a concentrated 3 days of training while The ALS Association Public Policy Conference provides information on how to best advocate for the needs of those with ALS and their care givers and how to encourage more funds for ALS research.

Public Policy Programs

Each year the entire ALS Association participates in “A Day on the Hill” and “Grass Roots Advocacy” programs to assure that legislators at both the state and federal level are fully aware of the needs of the ALS community. Our greatest successes in this program to date include:

The elimination of the 24-month waiting period for Medicare Benefits for those with ALS;
Increases in research funding through The National Institutes of Health from $15.1M to $41.3M in just 7 years;
The inclusion of ALS as one of the small handful of diseases recommended for study by the Department of Defense; and
The inclusion of Catastrophic Coverage in the Prescription Drug Benefits.

Research

ALSA vigorously promotes a collaborative approach to finding a cause or causes and treatments for ALS. This unique research effort brings together leading technology, exploration of gene therapy, stem cell biology, genetic research, environmental factors and patient care in the optimistic belief that there will be effective therapies for the disease.

Visit the The ALS Association's national website or
call ALSA's Information and Referral Service
(800) 782-4747

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