New Review Focuses on the Connection of Disturbances in RNA-Binding Proteins to ALS

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.

In the May 2018 issue of Frontiers in Neuroscience, current The ALS Association-funded researchers, Drs. J. Paul Taylor and Maria Purice of St. Jude Children’s Research Hospital in Memphis, published a comprehensive mini-review describing disease pathways that cause ALS, with a focus on mutations in RNA-binding proteins.

Many recent innovations in ALS animal and cells models that were instrumental in understanding the role of RNA-binding proteins in ALS are described.

Dr. Purice is a current Milton Safenowitz fellow who is currently studying how molecular pathways lead to both inherited (in which researchers have identified mutated ALS genes) and sporadic (non-inherited) forms of ALS, with a focus on RNA-binding protein, TDP-43.

In this review, Drs. Purice and Taylor do a deep dive into how disturbances in RNA-binding proteins, including TDP-43, cause ALS.

Continue reading New Review Focuses on the Connection of Disturbances in RNA-Binding Proteins to ALS

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.

The Power of Insights…and Kiddie Pools!

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 teamed up with a group of expert data analysts at Mastercard who spent more than 24 consecutive hours to help our national office and chapters gather insights into improving operations and strategies to advance our mission to find a cure for ALS.

Continue reading The Power of Insights…and Kiddie Pools!

Watch “Mr. Connolly Has ALS” Online Now!

“Life is full of challenges,” said Gene Connolly. “We get little say in what happens to us, but everything to say in how we deal with it. In fact, our response will define us.”

The short film, “Mr. Connolly Has ALS,” about a beloved Concord High School (Concord, N.H.) principal’s journey with ALS and his 14th and final year at Concord, had its public television broadcast debut on June 11 and is available to stream online throughout the U.S. until July 11.

Documentary filmmaker, Dan Habib, beautifully captured Gene Connolly’s positive spirit and humor as his disease progressed and he lost the ability to walk and speak. During the film, Gene, an educator for more than 35 years, sits down with some of the 1,600 students he served as principal, to answer their questions and give some final advice.

Continue reading Watch “Mr. Connolly Has ALS” Online Now!

ALS Community Workshop: How to Attend the Live Stream, Ask Questions, and Make Comments

On Thursday, July 12, the ALS community will have the opportunity to meet with representatives from the FDA and the pharmaceutical industry during an ALS Community Workshop in order to discuss the latest FDA guidance document related to ALS drug development.

The Workshop will be streamed live on our ALS Community Workshop webpage, Facebook page, and YouTube channel from 9:00 a.m. EDT to 3:00 p.m. EDT.

Both in-person and online attendees will be able to ask questions and comment. Continue reading for instructions on submitting questions and comments that may be addressed during the Workshop.

If you plan on attending the (online) live stream event, please register here: https://thealsassociation.formstack.com/forms/signup.

Continue reading ALS Community Workshop: How to Attend the Live Stream, Ask Questions, and Make Comments

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