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I AM ALS Launches Navigation Program as Single Entry Point for Patients and Loved Ones

August 25, 2020  -  Theresa Garner

FOR IMMEDIATE RELEASE: Aug. 25, 2020

CONTACT: Theresa Garner, [email protected], (904) 838-7160

One-Stop Resource Eliminates An Information Gap within the ALS Community and Better Connects Patients and Their Loved Ones to Groups Providing Supportive Care Resources

WASHINGTON -- I AM ALS launched the first-of-its-kind Navigation program designed as a single entry point for patients and their loved ones to learn about and access ALS resources. I AM ALS is a patient-centric movement revolutionizing how to fight disease. The Navigation program is a one-stop resource that eliminates an information gap within the ALS community and better connects patients and their loved ones to the groups already providing supportive care resources. 

“We have heard time and again how overwhelming it can be to live with an ALS diagnosis. From the moment a doctor utters those words, you may feel like the world dropped out from underneath you, all while being expected to navigate a complicated and ever-changing set of definitions, acronyms, technology and a complicated health care system. I AM ALS created this Navigation program to help put every resource within your grasp -- from what questions to ask at your first post-diagnosis appointment, to how to connect with other caregivers or find resources for financial support, to finding a handicap accessible rest stop along the Pacific Coast Highway -- our navigators can direct you to get the assistance you need,” I AM ALS CEO Danielle Carnival said. “I AM ALS was created for patients, by patients. This comprehensive resource delivered by people who care is what patients and their loved ones needed, so we created it to provide the system every patient deserves."

The Navigation team is comprised of trained nurses and social workers to offer personalized support through every step of ALS. It is available to the entire ALS community of patients, caregivers, surviving loved ones and healthcare professionals within the United States. The resource is completely free. 

I AM ALS presents a navigation model that for the first time is fully collaborative, expansive, and immediate. This statement is supported through a year-long detailed needs assessment, which included a series of stakeholder interviews, focus groups and a national survey of patients, caregivers and their loved ones to identify resource and access gaps felt by those impacted by ALS.

I AM ALS Navigation empowers patients, caregivers and their loved ones with relevant medical and research information, supports them emotionally, connects them with practical resources and helps them build a community around them. Connect with an I AM ALS Navigator to get personalized support through every step of ALS. Request assistance at iamals.org/navigation or call 866-942-6257 9am-5pm CST Monday to Friday.

About I AM ALS

I AM ALS is a patient-centric movement revolutionizing how to fight disease. The non-profit brings together ALS patients, advocates, organizations and researchers to deliver critical and innovative resources for patients, empower and mobilize patients and their networks to lead the fight for cures and transform the public understanding of ALS with a goal of delivering new, lifesaving drugs. Founded in 2019 by husband and wife team Brian Wallach and Sandra Abrevaya, I AM ALS was born out of their desire to rewrite the ALS story for Brian and the tens of thousands of other ALS patients. Learn more at iamals.org.

About ALS

ALS is a disease that attacks cells in the body that control movement. It makes the brain stop talking to the muscles, causing increased paralysis over time. Ultimately, ALS patients become prisoners within their own bodies: unable to eat, talk, breathe or move on their own. Their mind, however, often remains sharp so they are aware of what’s happening to them. ALS will affect 1 in 300 people in our lifetimes, and patients usually have no more than 3 years to live following diagnosis.

 

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