AMYOTROPHIC LATERAL SCLEROSIS
THE ALS CENTER OF EXCELLENCE AT MICHIGAN MEDICINE
The Program for Neurology Research & Discovery is home to the ALS Center of Excellence at Michigan Medicine. Within the Center is the Multidisciplinary ALS Clinic, which is dedicated to comprehensive, specialized care for persons with ALS and their families.
For more than two decades, the Multidisciplinary ALS Clinic has provided the care, support compassion and personal touch necessary when confronting ALS from some of the world’s best doctors, nurses and specialists. The innovative and collaborative environment at the clinic is truly a one-stop shop. Over one clinic session, patients are evaluated by a dedicated team that offers ALS symptomatic management and education, physical and occupational therapy and respiratory management. Furthermore, specialists in psychosocial support, nutrition, mobility, and speech and swallowing provide best-in-class care. Patients complete each visit with the knowledge that they have been handed a comprehensive plan aimed at providing therapies to extend life, improve quality of life and manage symptoms.
Support from this exceptional team of providers continues even after patients leave the clinic. The clinic team members answer questions through the Patient Portal website or app, to help ensure that treatment regimens are understood and carried out. In fact, a dedicated ALS nurse clinical care coordinator supports this mission. The clinic team members are true partners with their patients on this journey with ALS are there every step along the way.
An ALS diagnosis can have far-reaching financial impacts on patients and their families, and the fact that many vital services are not covered by insurance can create extreme hardship. Part of the Multidisciplinary ALS Clinic funds are allocated to supporting patients and caregivers who need extra help with equipment or support needs.
The driving force for exceptional patient treatment is groundbreaking research. In addition to patient care at the Multidisciplinary ALS Clinic, the ALS Center of Excellence features a brilliant translational research team. Their ultimate goal is to develop therapies at the lab bench that can make an impact at a patient’s bedside. Every patient seen in the Multidisciplinary ALS Clinic is invited to participate in world-renowned research. To date, participants have helped to identify that agricultural chemicals are associated with an increased risk of ALS, find new genes, and have participated in vital clinical trials to discover new treatments.
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, causes the loss of nerve cells that control muscle movement. ALS usually starts in midlife, although it can affect any age group. The disease is progressive and unfortunately fatal. Symptoms that people may develop with ALS result from weakness of the arm, leg, facial, and breathing muscles. No two people with ALS are alike and not everyone will develop all symptoms. The majority of ALS patients present with limb onset. For these individuals, early symptoms may include dropping things, tripping, fatigue of the arms and legs, and muscle cramps and twitches. A minority have bulbar onset, meaning muscles of the face are affected first, which can result in slurred speech or trouble swallowing.
The cause of ALS remains uncertain. In most cases, the disease is sporadic, meaning that there is no family history. In about 10-15%, there is a family history of ALS, and in some of these cases, the cause of ALS can be traced back to an abnormal gene. Despite the presence of a family history, ALS is felt to be related to the complex interplay of genetics and environmental exposures that may make one more susceptible to a neurological disease.
- The ALS Center of Excellence at Michigan Medicine is one of 62 ALS Association Centers of Excellence in the United States.
- Although there is no medication to stop or reverse ALS, treatments are available to help extend life and improve quality of life.
- ALS accounts for 80 percent of motor neuron disease and occurs in 2-4 people per 100,000.
- It is estimated that more than 30,000 American are living with ALS. Each year, 6,400 people are diagnosed in the U.S.
- Only 2 drugs are currently approved by the FDA to slow the progression of ALS.
- ALS is diagnosed based on the combination of a clinical history, clinical examination, and electrodiagnostic testing. Often, blood and imaging tests are also obtained.
- Veterans are twice as likely to get ALS. It affects veterans who served in peacetime and war. ALS impacts veterans, regardless of the branch of service or the war they served in.
- French neurologist Jean-Martin Charcot discovered the disease in 1869.
- A-myo-trophic comes from the Greek language. “A” means no. “Myo” refers to muscle, and “Trophic” means nourishment – “No muscle nourishment.” “Lateral” identifies the areas in a person’s spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates, it leads to scarring or hardening (“sclerosis”) in the region.
CURRENT RESEARCH PROJECTS
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