Telemedicine With a Twist Serves More People in Rural Areas

Innovation plays a key role in The ALS Association’s fight to develop treatments and a cure for ALS and to empower people living with the disease to live their lives to the fullest. During June and July, we are celebrating some of the key innovations helping us change the nature of ALS forever.

People living with ALS and their families need a great number of care services. We use innovative technology and partnerships to help fill the gaps in care for underserved populations and connect people with ALS to opportunities for greater quality of life.

Our Mid-America Chapter has developed a program that takes access to care a step further, while also incorporating research elements.

Continue reading Telemedicine With a Twist Serves More People in Rural Areas

Oregon Chapter Goes the Extra Mile to Give People With ALS a Voice

Innovation plays a key role in The ALS Association’s fight to develop treatments and a cure for ALS and to empower people living with the disease to live their lives to the fullest. During June and July, we are celebrating some of the key innovations helping us change the nature of ALS forever.

Have you ever been frustrated by not being able to get your point across?

People living with ALS often face this challenge. But thanks to our care services staff and partners, and assistive technology, people living with ALS can keep communicating, even after they’ve lost their voices.

After noticing that people in more rural areas who were interested in accessing alternative communication strategies weren’t receiving comparable services to those in larger cities, The ALS Association Oregon and SW Washington Chapter expanded its communication support.

The chapter launched a unique partnership with the University of Oregon’s Communication Disorders and Sciences program.

Continue reading Oregon Chapter Goes the Extra Mile to Give People With ALS a Voice

Building Valuable Partnerships for Better Patient Care

Innovation plays a key role in The ALS Association’s fight to develop treatments and a cure for ALS and to empower people living with the disease to live their lives to the fullest. During June and July, we are celebrating some of the key innovations helping us change the nature of ALS forever.

The ALS Association clinic network is focused on high-quality standards and multidisciplinary care. One of those clinics recently forged a particularly innovative partnership for collaborative care.

Through building relationships with the University of Iowa ALS Clinic and engaging two competing hospitals, The ALS Association Iowa Chapter established a new collaborative ALS Clinic to fulfill unmet needs in the Des Moines region. After a two-year span of hard work and creative thinking, the unique ALS Clinic officially opened in Johnston, Iowa, in May 2017.

This clinic brings together not only the University of Iowa’s core neurology team, but also therapists from two hospitals and staff from The ALS Association Iowa Chapter. And, for an even greater scope of care, The Muscular Dystrophy Association is invited to participate in the clinic.

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The clinic has now been open one year and has been a huge success. Patients no longer have to drive up to four hours one way to get to a clinic. And they get to see the same neurology team each time, which helps maintain consistency of care.

The new ALS clinic is filled to capacity each month, and the Iowa Chapter has also seen an increase in referrals due to the elevated involvement. The care services team from the Iowa Chapter is now able to see more people with ALS more often and provide the consistent and compassionate care provided by all ALS clinics.

Donate today to help The ALS Association continue to provide quality care and establish even more innovative partnerships to serve people living with ALS and their families.

This is a critical time to donate since our corporate partner, Biohaven Pharmaceuticals, is matching all gifts up to a total of $25,000! Biohaven is committed to supporting innovation to help improve the lives of all people impacted by ALS.

To learn more about Biohaven’s commitment to advances in ALS and other neurological diseases, visit www.biohavenpharma.com. Don’t miss out on doubling your impact.

Pison Technology Ignites Innovation to Help People With ALS Communicate

Innovation plays a key role in The ALS Association’s fight to develop treatments and a cure for ALS and to empower people living with the disease to live their lives to the fullest. During June and July, we are celebrating some of the key innovations helping us change the nature of ALS forever.

Frustrated with the limited availability of assistive technology devices for his mother, who was diagnosed with ALS, Dexter Ang quit his finance job, partnered with David Cipoletta, an underwater robotic engineer, and set to work developing technologies that could universally, massively, and quickly improve the quality of life for people living with ALS.

Dexter and David named their start-up Pison Technology after Ang’s mother’s cat, who provided her with comfort.

“It was an honor for us to participate in and win a prize at the Assistive Technology Challenge because it validated that our technology is at the forefront of innovation for people with ALS,” said Dexter. “The world needs technologies like ours to be able to help all patients worldwide. The ALS Association, along with NASA, will be major partners with us as we do our research and as we begin distribution and sales of our product worldwide.”

Continue reading Pison Technology Ignites Innovation to Help People With ALS Communicate

Guest Post: Young Caregivers Received Special Training and Support at National ALS Advocacy Conference

By Dr. Melinda S. Kavanaugh, Associate Professor of Social Work, Helen Bader School of Social Welfare, University of Wisconsin-Milwaukee

“It was nice to connect with other people and it made me feel less alone.” (YCare training participant)

For many children and young adults in families with ALS, this is a common refrain; they feel alone and isolated from their peers, especially if they are involved in caring for their loved ones. These young caregivers often help with care tasks, yet have little training or guidance in how to do the specific tasks.

With this in mind, my colleagues and I conducted a study of youth and families in ALS that was funded by The ALS Association. Over 60 percent of respondents said they had no training, despite being involved in care tasks ranging from bathing and feeding family members, to transferring and using complicated assistive devices.

In addition to the data on whether youth received training, I asked how they knew what to do. Responses ranged from “winging it” to “using common sense.” As evidenced in the introduction quote, not only are youth minimally trained, but they have also little social support from peers.

Continue reading Guest Post: Young Caregivers Received Special Training and Support at National ALS Advocacy Conference

Home, Smart Home

Innovation plays a key role in The ALS Association’s fight to develop treatments and a cure for ALS and to empower people living with ALS to live their lives to the fullest. During June and July, we are celebrating some of the key innovations helping us change the nature of the disease forever.

Assistive technology can provide a major benefit to people living with ALS and their caregivers. That is why some of the advances we have seen in recent years, thanks to generous donations from the ALS Ice Bucket Challenge and beyond, are so exciting.

To keep progress moving, we are committed to leveraging innovative technology at all levels to provide compassionate care and improve quality of life.

The Minnesota/North Dakota/South Dakota Chapter’s ‘Smart Home’ Pilot Project, which helps individuals outfit their homes with assistive technology that makes their environment more accessible, is one such example.

Continue reading Home, Smart Home

Join Us at ALS Community Workshop: Developing Drugs for Treatment, Guidance for Industry – July 12

The ALS Association is hosting ALS Community Workshop: Developing Drugs for Treatment, Guidance for Industry on July 12 in Washington, D.C., and the entire ALS community is invited.

The goal of the workshop will be to provide targeted feedback and information to the Food and Drug Administration (FDA) from people with ALS, caregivers, and stakeholders to inform revisions of the FDA’s Draft Guidance on ALS Drug Development.

Continue reading Join Us at ALS Community Workshop: Developing Drugs for Treatment, Guidance for Industry – July 12