ALS Resources for Fire Fighters

Muscular Dystrophy Association (MDA) and the International Association of Fire Fighters (IAFF) have joined together to coordinate an educational initiative to raise awareness and provide resources for fire fighters impacted by amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. Some research shows that fire fighters have a two-fold risk of ALS as compared to the general population. This initiative will provide critical resources to support fire fighters and their families who are living with ALS.

Fire Fighters have a two-fold risk of developing ALS.

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MDA’s Commitment to ALS

MDA has been committed to ALS research and the ALS community since 1959 when Eleanor Gehrig, wife of the late baseball player Lou Gehrig, was our national campaign chair. Since then, MDA has been at the forefront of ALS research, care, advocacy, and support.

Most recently, the Muscular Dystrophy Association was among one of three leading ALS organizations to advocate for the ACT for ALS bill, which President Biden signed into law in December 2021.

To learn more about MDA’s impact in ALS, check out our impact sheet.

Symptoms & Diagnosis

What are the signs and symptoms of ALS?

For many individuals the first sign of ALS may appear in a hand or arm, as they have trouble with simple tasks such as buttoning a shirt, writing, or turning a key in a lock. In other cases, symptoms initially affect one of the legs, and people experience awkwardness when walking or running or they notice that they are tripping or stumbling a lot.

What are the signs and symptoms of ALS? More info in our ALS Fact Sheet.

For additional signs and symptoms, please visit our website or download our ALS Fact Sheet.

How is ALS diagnosed?

There is no test that can provide a definitive ALS diagnosis. Diagnosis is based on a detailed history of symptoms and signs observed by a physician during physical examination, along with a series of tests meant to rule out other diseases that can mimic ALS.

Read more about the diagnosis process.

Genetic Testing: About 5 to 10 percent of ALS is familial — meaning it arises in families in which there is a history of ALS. Several genes associated with ALS have been identified or at least mapped to a specific region of a chromosome. The other 90 to 95 percent of ALS is sporadic, meaning it occurs without a family history (in other words, "sporadically"). There appear to be genetic variations that influence one's susceptibility to sporadic ALS, even if they do not necessarily cause the disease by themselves.

Finding Care

Where can I, or my loved one, go for care?

MDA Care Centers provide expert, multidisciplinary care for individuals living with ALS. Located at more than 150 of the country’s leading hospitals and health care institutions, our Care Centers serve as the nexus for expert clinical care and medical research. Our MDA/ALS Care Centers demonstrate expertise in the treatment of ALS, providing the most comprehensive care available.

How is ALS treated?

Currently, there is no cure for ALS and no effective treatment to completely halt or reverse the progression of the disease. However, there are currently two treatments approved by the FDA that may slow the disease course, help control symptoms, prevent unnecessary complications, and make living with the disease easier. These treatments include:

  • riluzole (brand names: Rilutek, Exservan, Tiglutik)
  • edavarone (brand name: Radicava)

In some cases, both drugs have been prescribed to patients.

Take our MDA Access to Approved Therapies Workshop to learn more about FDA-approved treatments for ALS. (Coming soon!)

Rilutex (riluzole)

Oral tablet form of riluzole FDA-approved in 1995 The first drug available to treat ALS Acts to slow the progression of ALS symptoms.

Exservan (riluzole)

Oral film form of riluzole FDA-approved in 2019. Dissolves automatically by placing on the tongue. Does not require water making it an option for those who have difficulty swallowing. Acts to slow the progression of ALS symptoms. Talk with an ALS JourneyMate specialist for support and resources.

Tiglutek (riluzole)

Oral liquid form of riluzole FDA-approved in 2018. Thickened liquid to help individuals with swallowing difficulties. Can flow through feeding tubes. Acts to slow the progression of ALS symptoms. Visit tiglutik.com to learn more.

Radicava (edaravone)

Intravenous infusion FDA-approved in 2017. Administered through a needle in a vein at an infusion center, doctor’s office, hospital, or at home by a healthcare professional. Found to slow the decline in daily, physical function. Searchlight Support can help provide access to Radicava as well as resources to have you navigate the options available.

Be sure to tell your care team about all the medications you currently take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. As with all treatments, it is important to speak with your healthcare provider about whether or not these treatments are right for you.

In addition to these FDA-approved treatments, medical interventions and technology have vastly improved the quality of life for people with ALS by assisting with breathing, nutrition, mobility, and communication. Proper management of symptoms and proactive use of medical interventions and equipment can make a positive difference in day-to-day living, and potentially may lengthen life.

Join the MDA Community

Next Steps in the Journey

Everyone’s journey with ALS is different. MDA is here to provide support and resources every step of the way. That is why we encourage newly diagnosed individuals to join the MDA community. By joining, you will receive the latest updates on research and clinical trials, gain access to impactful programming, and have opportunities to connect with the ALS community, including individuals, family members, clinicians, researchers, and advocates.

Join the MDA Community

The links on the left provide information on a variety of resources. You can also view the community resource list on our website.

If you cannot find the information or resources you are looking for, please reach out to our National Resource Center Monday through Friday 9 a.m. - 5 p.m. CT at (800) 572-1717 or by email at ResourceCenter@mdausa.org.

If you would like to connect directly with a member of the MDA Fire Fighter Partnership team, please email us at filltheboot@mdausa.org.

Advocacy, Research, & Education

Advocacy

MDA was among one of three leading ALS organizations to advocate for the ACT for ALS bill, which President Biden signed into law in December 2021.

  • ACT for ALS will create a new grant program that funds access to investigational ALS treatments for people living with ALS who cannot participate in clinical trials, while also supporting research on treatment safety and ALS progression.
  • ACT for ALS will invest in neurodegenerative disease research through a brand-new Food and Drug Administration (FDA) Rare Neurodegenerative Disease Grant Program.
  • ACT for ALS will establish a Health and Human Services (HHS) Public-Private Partnership for Rare Neurodegenerative Diseases jointly led by the FDA and the National Institutes of Health (NIH), the first federal entity explicitly charged with the responsibility to speed the development and approval of therapies for rare neurodegenerative diseases.

To learn more about the ACT for ALS bill, watch our Advocacy Institute Webinar.

Research

Intense research is being conducted in many areas related to ALS, from basic science seeking the roots of the disease to therapy development to find effective treatments. To learn more, visit the links below:

Community Education

MDA offers free virtual education programming throughout the year featuring presentations from top experts in the field on a variety of topics relevant to the ALS community.

Medical Equipment & Navigating Insurance

Watch these informative webinars:

Navigating Insurance Coverage

  • MDA Access Workshop: Insurance Another on-demand workshop that allows you to navigate at through the information at your own pace. It provides an overview of the types of health insurance, obtaining and understanding insurance coverage, and overcoming barriers to coverage.
  • Health Insurance Worksheet

Social and Emotional Support

Support for Caregivers

Personal Stories of Individuals Living with ALS

Sometimes what helps the most is knowing you are not alone. Click on the links below to read and listen to personal stories from the ALS community. If you are interested in sharing your story, please reach out to us at resourcecenter@mdausa.org.

Meet Shaun Probert

Former Member of Local 516 talks about his journey living with ALS.

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To hear more of Shaun’s story, please watch his presentation to IAFF members at the 2012 IAFF Convention.