Diseases, Disorders & Medical Disciplines
Adolescents/Youth (13-19 years)
Children (4-12 years)
Age-specific educational gift bags for children affected by ALS
Families have been very appreciative of having their children acknowledged with a gift, as well as having received informative ALS educational materials based on their specific age range.
Disabled, General or Disability unspecified
The Learning Lab is a dedicated space designed and equipped with ALS-appropriate equipment and demonstration tools in a bedroom setting much like in anyone's home. The room consists of state-of-the-art equipment on which to demonstrate to patients, family members, caregivers, and ALS professionals the correct usage of most items they will need throughout the progression of ALS. A television and DVD player were added to air training videos in a "live" setting.
Many family members have thanked us for the opportunity to be trained on intricate critical equipment for handling their loved one.
The ALS Clinic Program provides comprehensive care for people with ALS by utilizing a multidisciplinary team of various ALS specialists: neurologist, physiatrist, nurse, social worker, dietitian, occupational therapist, physical therapist, speech/language pathologist, respiratory therapist, communication specialist, and wheelchair seating specialist. Additional physicians specializing in issues that affect people with ALS may attend the clinic or work collaboratively with the center staff. This multidisciplinary approach has been proven to improve quality of life and prolong life for people with ALS
The clinic runs at capacity every month with a wait list in place.
Other Named Groups
The Durable Medical Equipment Loan Program offers the use of needed medical equipment - wheel chairs, lifts and other assistive devices as the patient's needs progress.
We provide for basic daily needs - shower and commode chairs, eating utensils, etc. as well as larger more expensive equipment such as wheel chairs and lifts
At present, we have many types of wheel chairs - from the very basic and least expensive ($200) to the very intricate and costly ($40,000).
As an ALS patient's physical needs change, typically very quickly, we are able able to meet their needs with specialized equipment at every stage of their progression - from the very basic to the most phycically challenging.
Because of our successes, in a show of appreciation, many patient families donate additional equipment in memory of their loved one to the association in hopes of helping others as they navigate the trials of this devastating disease.
Other Named Groups
The Augmentative Communication Program lends or assists with the purchase of augmentative communication devices that are provided to those who lose the ability to communicate with their voice due to the progression of the disease.
We never have communications equipment sitting and waiting for someone that has a need. Most often, an item will be returned from use, cleaned, checked out, and sent on to the next person within a very short time frame.
Personalized comprehensive information is provided on an ongoing basis about ALS disease progression, chapter services, equipment needs, home modifications, referrals for services in the community, caring for the caregiver, as well as Guidance at maneuvering the complex social and healthcare systems. Care consultations may occur in the home, the chapter office, and via phone or video conference.
Our patients and families are constantly thanking us for providing information that would take them much needed precious time - time they do not have.