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
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
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
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
In recognition of ALS Awareness Month, we’re sharing stories nearly every day in May about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, the powerful fundraisers and the participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure.
Studies have shown the value of attending a multidisciplinary clinic for a person with ALS, including longer survival, increased quality of life, and improved access to potential therapies. Since 1998, The ALS Association’s national Certified Treatment Centers of Excellence (CTCEs) network has provided ALS care and services in a supportive atmosphere, with an emphasis on hope and quality of life.
This is the first article in what will be an ongoing series of spotlights on the 62 CTCEs across the U.S. that have partnered with The ALS Association.
Continue reading Froedtert & Medical College of Wisconsin: A Certified Treatment Center of Excellence
In recognition of ALS Awareness Month – with a theme of “Raise Your Voice” – we’re sharing new stories nearly every day in May. They’re stories about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, the generous fundraisers and the participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. They are all part of our ALS community, helping us move toward a world without ALS. This story highlights our National ALS Advocacy Conference – which embodies the true spirit of Raise Your Voice.
We’d like to extend a huge thank you to the more than 570 ALS Advocates who participated in our 2018 National ALS Advocacy Conference in Washington, D.C., this week. Nearly every state in the country was represented and nearly half of the participants were attending for the first time.
Most importantly, more than 100 people living with ALS made the trip to Washington to tell their stories and ask their members of Congress to fund research and do away with the five-month wait for Social Security Disability Insurance.
“Attending the ALS Advocacy Conference was one of the most rewarding things I have ever done,” said Karen Dunn, a first-time participant from Pennsylvania who was attending on behalf of her friend Melissa Cordek, a 37-year-old mother diagnosed with ALS two years ago. “I encourage everyone to become an ALS Advocate.”
Continue reading Passionate ALS Advocacy Fuels the Fight for a Cure
In recognition of this year’s ALS Awareness Month – with a theme of “Raise Your Voice” – we’re sharing many new stories about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, the powerful fundraisers and participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the fourth profile in that series.
“I don’t know how I would have done this without your guidance.”
Joumana Baroody heard words like these many times throughout the nine years she worked as a nurse at the ALS Clinic at the University of Chicago. They were spoken by people diagnosed with ALS and their families and caregivers.
They’re words Joumana often remembers before going to sleep at night, when she wakes in the morning, and which she keeps close to her heart as she continues to support the ALS community in her current role as a director of care services for The ALS Association Greater Chicago Chapter.
“We actually keep quotes from the people we serve,” said Joumana. “They’re kept in a folder and we share them with the entire chapter staff to remind us all of what we do every day and why.”
Continue reading Joumana Baroody: Raising Her Voice as an ALS Care Advocate