Research & Patient Center

Approved Treatments for ALS

The quality of life of patients with ALS can often be improved by various treatments and interventions. We at the Foundation realize that managing symptoms is often a full-time responsibility for the patient and their caregivers. Connecting with a clinic such as the Lois Insolia ALS Clinic at the Les Turner ALS Research and Patient Center helps patients and their families coordinate care in the best way possible. Care provided by experts in ALS multidisciplinary centers has been shown to prolong survival (Miller, et. al., 2009).

Proper positioning, exercise, physical therapy and medications can help patients manage their symptoms. Your doctor at the Lois Insolia ALS Clinic at the Les Turner ALS Research and Patient Center can help you decide which of the available therapies are right for you.  For example, a feeding tube may be suggested if there is inadequate nutrition, extended meal times, rapid weight loss, high risk of aspiration (inhaling food or liquids into the lungs) or recurrent pneumonia. A wide range of devices and techniques can address problems with communication. Ultimately, ALS may result in sleep interruptions and changes in breathing, requiring consideration of airway clearance therapies. This may range from medications to non-invasive (mask) ventilation to a tracheostomy with mechanical ventilation.

Although there is no existing cure for ALS, the Les Turner ALS Foundation continues to advocate for advances in ALS research and patient care, as it has for over 40 years. Listed below are FDA-approved treatments. Decisions regarding medication should be made in consultation with your neuromuscular specialist and should be part of a comprehensive treatment approach.

Radicava™
On Friday, May 5, the FDA approved the first ALS treatment in 22 years – Radicava™, an infusion treatment from MT Pharma America, also known as edaravone. According to the FDA, the pivotal clinical trial for Radicava in Japan showed a 33 percent slowing of loss of function in participants as rated on the ALS Functional Rating Scale. While there is still much to be known about Radicava, its availability and administration, this is a promising step for ALS patients. We are hopeful this drug will become part of an overall treatment plan for people with ALS. To learn more about Radicava, read our FAQ

Searchlight Support is now open for people living with ALS who have been prescribed Radicava. Searchlight Support is a hub that aids in the insurance benefits investigation process for patients in preparation for availability of RADICAVA™.

Before enrolling in Searchlight, you must first fill out the forms below with the assistance of your healthcare provider.

Radicava useful links:
MT Pharma Press Release
Product Fact Sheet
Patient Support Fact Sheet
Access Patient FAQ
Searchlight Support info
Searchlight Form Part 1
Searchlight Form Part 2

To contact the Lois Insolia ALS Clinic at the Les Turner ALS Research and Patient Center at Northwestern Medicine, please call 312-695-7950.

Rilutek©
Rilutek, also known as riluzole, was the first FDA-approved medication for the treatment of ALS, approved in 1995. It has been proven to modestly increase lifespan. Learn more about Rilutek

Nuedexta
Nuedexta was approved by the FDA in 2011 to treat pseudobulbar affect, a symptom that can occur in ALS/MND and other neurological conditions, which is characterized by inappropriate, uncontrollable laughing and crying. Learn more about Nuedexta

 

Meet our world-class ALS researchers:

Dr. Teepu Siddique

Dr. Teepu Siddique

The Les Turner ALS Research Laboratory led by Teepu Siddique, MD, focuses on understanding the processes by which ALS progresses so that effective treatments can be developed. The lab was first dedicated in 1979 and has been directed by Dr. Siddique since 1991.

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Dr. P. Hande Ozdinler

Dr. Hande Ozdinler

This lab, opened in 2008, focuses on the motor neurons which reside in the brain and connect with motor neurons in the spinal cord to initiate and control movement. These two motor neuron populations progressively degenerate in ALS patients, and therefore require immediate attention.

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Dr. Evangelos Kiskinis

Dr. Evangelos Kiskinis

The Les Turner ALS Foundation Research Laboratory led by Dr. Evangelos Kiskinis opened in January 2015. Dr. Kiskinis works on understanding the level and nature of heterogeneity in ALS and to identify points of effective and targeted therapeutic intervention.

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Hope and help for people with ALS.

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