The mission of ALS in the Heartland is to provide the highest quality of support and care for people with ALS, their caregivers, and their families. This agency, now seventeen years old, was founded by ALS patient families to provide care and support to those living with ALS right here, right now. Every service is available to each family and all services are at no cost. ALS in the Heartland is not funded by or associated with the National ALS Association (ALSA). They are a separate resource we encourage you to also utilize. We hope you will reach out and allow us to assist you and the ones you love.
Education, Guidance, and Community Resources
Our agency has a variety of ALS specific information available, as well as referrals to numerous community resources. Please reach out to ALS in the Heartland for reading materials, relevant videos, and helpful websites on everything from basic information about ALS to detailed descriptions about all facets of the disease. Register for Agency Services
Individual and Group Support
ALS in the Heartland has been honored to work with hundreds of families impacted by ALS. Our primary goal is to provide support and education through the Patient Services team. Every individual is connected with a Patient Services Worker who provides emotional support, advocates on your behalf, connects you with resources, and answers your questions. These services can be provided in person, by telephone, or through other means such as Zoom, e-mail, or text. Individuals and families may also find ease in using the agency’s Telehealth program which provides high-definition webcams to allow for secure, expedient connection to the Patient Services team.
Respite Grant Program
Often a big concern for individuals and families touched by ALS is quality in-home care. Balancing the emotional and physical needs of caregivers can be an ongoing challenge. Respite care is intended to provide a safe environment for the person with ALS while the caregiver addresses personal needs and daily responsibilities. Respite can relieve stress and prevent caregiver burnout. To help with this, any person with ALS who resides in Nebraska, Iowa, or South Dakota and who is registered with ALS in the Heartland, is eligible to apply for our Respite Grant Program. ALS in the Heartland provides payment to a professional agency or individual for respite care (thanks to funding support from the Enrichment Foundation and Team Gleason). Register for Respite Support
Equipment Loan Program
ALS in the Heartland loans or purchases various equipment at no charge.
Mobility items such as walkers, rollators, manual wheelchairs, patient lifts, sit to stand lifts, and power wheelchairs.
Resources for communication devices.
Bath and toileting equipment such as shower chairs, shower benches, commodes, elevated toilet seats, and safety frames.
Daily living aides such as reachers, gait belts, dressing aids, toothettes, boogie boards, and foam for utensils.
We also have access to other community resources that loan equipment. For any equipment loan inquiries or to request specific information, please contact Blaine Morse, Patient Services and Equipment Coordinator, at 402-592-2374 x202 or firstname.lastname@example.org.
Many families touched by ALS are most concerned about the disease’s impact on the children in the home or family. ALS in the Heartland has many important resources to aid in talking with children of all ages about ALS. Additionally, Children’s Funds are available for ages 18 and younger that assist the family in promoting normal, desired activities for the kids by relieving some or all of the financial burden.
Just as ALS is unique to every individual, ALS in the Heartland provides unique services to every individual and their family. Whether that is through financial requests, legacy work, transportation support to medical appointments, or something else, contact ALS in the Heartland and discuss how we can support your requests.
Referrals to experienced Medical Professionals
ALS in the Heartland has a good working relationship with ALS Clinics and medical professionals that specialize in ALS throughout the area and can assist individuals in accessing appropriate and needed medical services. We are fortunate to act as the social service support on a multidisciplinary team in Dr. Gary Pattee’s MDA Care Center for ALS Patients.
Our agency has a team of volunteers who are willing to help patient families with everything from yard work to building a ramp for easier accessibility to their place of residence. Volunteers are also available for companionship, respite, and assistance with household errands or chores.
Advocacy and research
ALS remains a rare and often unknown disease. Although not doing the work ourselves, ALS in the Heartland strives to increase community awareness of this disease and promotes research efforts both in our local area and those that are occurring on a national basis. Additionally, ALS in the Heartland follows legislative advances in Nebraska, Iowa, and the entire United States that would benefit individuals and families impacted by ALS.