How We Help

Serving Patients, Caregivers and Families

Inspired by longtime volunteers who form the core of our committed board of directors, ALS in the Heartland was formed in May 2006 and incorporated as a non-profit agency on June 4, 2006. ALS in the Heartland received its 501(c)(3) determination letter on April 29, 2007.

Our mission is to serve as a dedicated resource to ALS patients, their families, friends and caregivers. We aim to enhance the quality of life of all people affected by ALS whom we help serve, to heighten community awareness of this devastating disease, and to strengthen public and legislative support in the fight against ALS. Our services include in-home consultations, support groups, community resources and referrals, an equipment program and a respite care voucher program. 

Amyotrophic lateral sclerosis, or Lou Gehrig's disease, is a terrible disease. The people in the heartland who are affected by ALS provide incredible examples of courage and grace. We ask you to join them--and all of us--to provide needed support as we help the ALS community and work together toward a cure.

Here in the Heartland, we want to be a resource for you and be part of your support network. We offer the following:

• Professional consultation in your own home, or via telephone and e-mail
• Information and guidance about ALS and local resources
• Assistance through our Equipment Program
• Support through our Respite Care Voucher Program
• Camaraderie in our monthly Support Groups
  

Equipment Program
We loan various equipment at no charge. Wheelchairs, communication devices, shower/tub chairs and walkers are a sampling of what we have available. Additionally, we have access to other community resources which also loan a variety of equipment.

Respite Care Voucher Program
Balancing the emotional and physical needs of caregivers is an ongoing challenge. For those affected by ALS, the magnitude of these needs can be great.

Respite is defined as a short-term period of rest or relief. Respite care is thus intended to provide a safe environment for the patient while the caregiver addresses other needs and daily responsibilities. Respite can relieve stress and prevent caregiver burnout.

Any ALS patient, residing in Nebraska and western Iowa, and registered with ALS in the Heartland, is eligible to apply for the Respite Care Voucher Program. ALS in the Heartland provides payment to a professional home care agency for respite care pending available funds.

Click here to Register for the Respite Program.

Support Groups
Our Support Groups are open to the public and attended mostly by patients, their families and friends. We have guest speakers from the community, sharing information on topics such as physical and occupational therapies, speech devices, and wheelchair concerns. Additionally, we encourage Group members to share any concerns or questions that may arise during the course of the disease.

Support Groups are at the following locations, please call to confirm dates and times:

* Columbus and Norfolk Support Group alternate

For any further questions or concerns about ALS and our services, please call or send us an email. We are privileged to provide support to everyone in our community who is affected by ALS.

Skills for Grief Therapy

ALS in the Heartland is currently working on our Skills for Grief Therapy program--a variety of resources that will help persons who have lost loved ones to ALS in their process of healing. Please contact ALS in the Heartland for more information.

Mobility Program

ALS in the Heartland, which has a record of helping patient families with their mobility and transportation needs, is working on formalizing its mobility offerings.We encourage patient families to please contact us...and allow us to consult on mobility and transportation needs.

Awareness

Why is ongoing, thorough awareness so vital to our mission?

As early as possible in the diagnosis of ALS, we want the person who has been diagnosed with ALS--and everyone who is connected to this person--to be able to contact ALS in the Heartland for education, support and guidance. Our patient services director and her extended volunteer base are committed to presenting helpful information and services to the patient and his or her family, friends and colleagues, as soon as possible.

Our message in the media, which frequently includes profiles of the brave people whom we are dedicated to helping, is designed to alert the entire community to the need to work together to eradicate ALS while also presenting the programs and services provided by ALS in the Heartland.

What about national advocacy efforts?

ALS in the Heartland representatives and volunteers attended the ALS Advocacy Day and Public Policy Conference on May 14-16, 2007. We scheduled meetings with the five Nebraska legislators. While all of the area legislators agree that ALS Registry Act and Dept. of Defense funding initiatives should be authorized, Congressman Lee Terry stepped forward to be co-signer, along with Congressman Elliot Engel of New York, of the ALS Registry Act. As of June the ALS Registry Act has 200 co-sponsors. We are glad for Congressman Terry's support and the support of all Nebraskans and Iowans in the fight against ALS. Please contact Steve Langan, executive director, with questions and comments on ALS in the Heartland's role in advocacy efforts.

Representative of ALS in the Heartland will attend the 2008 ALS Advocacy Day and Public Policy Conference--May 11-13 in Washington, DC. Everyone is welcome to attend. If you wish to join us at the conference, please contact ALS in the Heartland.