Let’s See More Support

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The challenges faced by people living with ALS and their families can feel insurmountable at times, to say the least. Expanding access to vital assistance programs and services that offer much-needed support and hope to families battling this disease is critical to making it livable for everyone, everywhere, until we can cure it.

Before the Ice Bucket Challenge, the lack of ALS awareness only added to the struggle individuals and their families face. The needs of people living with ALS were not well understood and services were often lacking. Many medical professionals did not understand the disease or how to recognize its symptoms.

“Once the Ice Bucket Challenge happened, people knew what ALS was,” said Leslie Ryan, our Vice President of Community and Professional Education. “People knew the disease, they may have known it as the Ice Bucket Challenge disease, but they at least knew what it was. And increasing the familiarity and the awareness about the disease had a ripple effect to increase care, and support, and services.”

Communities rallied together, creating a surge in awareness and compassion like never before. Families impacted by ALS found their voices amplified, and support poured in from all corners.

And because of the generosity and kindness from this community, we’ve been able to expand access to vital assistance programs and add new services to offer much-needed support and hope to families facing this relentless disease.

“We didn't have the technology or the funding to have some of the tools that we have now that are really impacting people's lives with ALS,” explained Leslie.

Geo-mapping, telehealth, more multidisciplinary clinics, all of those things are really helping people live better and longer with ALS and those are all impacts of the Ice Bucket Challenge.”

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“ALS is so different for every person who is diagnosed and because it is so different, we need a variety of services and support options for them to manage their care and to give them the information that they need,” says Leslie. “And so, things like My ALS Journey, or a support group, or a caregiver training are all really important because people need them at different times. People need different types of equipment at different times. So that's why we exist, to be able to meet the needs of the people at the time that they need them.”

Before the Challenge there were often extensive waiting lists for essential equipment like mobility aids and communication devices. With increased funding, we've been able to invest in areas that will have immediate impact, like providing individuals with the equipment they need to maintain their independence. And our care services coordinators around the country help people navigate the disease.

“That can look like helping them navigate their insurance, and making sure they're getting the proper benefits,” says Jennifer Hjelle, our Chief Community Engagement Officer.

We have an extensive equipment loan pool program where we're loaning pieces of medical equipment to help people stay independent, stay in their homes, access the world the way they want to.”
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Person with ALS and caregiver

“We're providing them with technology that can help them control their environment. And it can help them use their voice even when maybe they've lost their ability to speak,” said Jennifer.

But our work is far from over. Despite the progress we've made over the past decade, there are still many hurdles to overcome. As we strive to see more support for families living with ALS, we invite you to join us in our mission.

We still need more support.

We still need a cure.

Let's See It End.

We're dedicated to providing people living with ALS and their families with the information, support, and tools they need free of charge. To learn more about the programs we offer, visit our website HERE.

Join us this summer at ALS Nexus, a conference featuring a variety of sessions that focus on the latest developments and opportunities in research, care, and advocacy. Learn more and register TODAY!

To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog.

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