We’re excited to kick off National ALS Awareness Month. The next 31 days will be dedicated to education about the disease and the work happening around the world to find a cure, and to advocating for people with ALS and their caregivers.
This year, we’re asking you to Raise Your Voice to elevate the fight against ALS.
As Simon Fitzmaurice, who lost his nine-year battle against ALS in 2017, wrote in his memoir, “It’s Not Dark Yet”: “Communication is key with ALS because the disease takes away your ability to speak. But it need not take your voice.”
At last week’s 70th Annual American Academy of Neurology (AAN) Meeting in Los Angeles, neuroscientists and neurologists from all over the world came together to present their important work and learn from each other. We are proud that many top ALS researchers we support attended and presented a wide range of research, on topics ranging from environmental risk factors to work leading up to clinical trials.
This is the first in a two-part series highlighting some of the exciting work presented at the AAN event. This first article discusses the research around environmental factors impacting ALS risk.
Neuraltus Pharmaceuticals, Inc. reported disappointing results from its phase II clinical trial studying the impact of an immune regulator, NP001, in people living with ALS who had increased levels of inflammation. The company presented the negative results during the 70th Annual American Academy of Neurology Meeting in Los Angeles.
Today, we are happy to be joined by ALS clinician scientist Dr. Peter Creigh from the University of Rochester in Rochester, N.Y., the recipient of the 2018 Clinician Research Training Fellowship in ALS Research. The fellowship is given by The ALS Association, in partnership with the American Academy of Neurology (AAN).
Dr. Creigh is dedicated to improving ALS care by using telemedicine in ALS clinical research. He hopes to make it easier for people living with ALS to participate in research studies.
He says, “Virtual research visits, conducted in individuals’ homes through telemedicine, could potentially enable every individual with ALS, from anywhere, to participate and have a voice in ALS research.”
We recently sat down with Dr. Creigh to learn about his important work and get to know the person behind the white coat.
This article is the first in a new monthly blog series called “Calaneet’s Corner.” Each column will provide you with a mission update and let you hear directly from Calaneet. Our first column goes behind the scenes to get to know Calaneet.
What most excites you about leading The ALS Association?
Between the progress of science and the impact of the Ice Bucket Challenge, there’s a lot going on, particularly in the research space. Promising treatments are on the horizon. We’re potentially at a phenomenal tipping point for the disease. This is an unusual place to be for any disease, but especially one like ALS. I also look forward to tackling some of the bigger challenges that people with ALS face, such as the high costs of home health care.
The 2018 Leadership Conference for The ALS Association executives, board members, and other staff was held in February. Can you tell me a bit about that? How did it motivate and inspire you?
The Association’s annual Leadership Conference highlights the power and impact of collaboration – both within the Association and with our external partners. So many great ideas were brought forward, and I was personally involved in many in-depth conversations about improving people’s lives and what we can do in the future. In my mind, Leadership Conference spotlighted what’s already happening, but also created more momentum.
How do you spend your spare time?
If I’m able to find any free time, you’ll find me doing something outdoors – running, walking, hiking, or biking. I’ve done many triathlons and half-marathons. I enjoy being physically active. It helps me think. Fresh air is good for the soul. I also love spending time with friends. And, I like really good food.
What is one life-changing moment you’ve had?
I love to travel – especially experiencing the outdoors and exploration. When I lived in Asia for a couple of years, I had the opportunity to travel all over the world and experience many cultures. From that time, I took away that instead of asking why someone does something, we should ask, “Why not?”
It’s a less judgmental way of looking at things. You flip the lens so you’re looking from a more positive angle – opening your mind instead of closing it. Those years living abroad permanently changed my perspective.
People who spend time with you will hear you talk about finding “Mission Moments” and about “The Why.” Tell me more about that.
We need to focus every day on what we do and why we’re doing it – to keep our minds on our vision to create a world without ALS. Mission Moments are clear examples of movement toward that vision and of our purpose as an organization. If we’re paying attention, we experience Mission Moments every single day – or even multiple times each day.
I have this folder on my computer desktop called “The Why.” In it are email messages, stories, anecdotes, and other things pointing directly to why The ALS Association exists, who we serve, and what we do for people with ALS and their families. When I’m having a difficult day, I often only need to glance at that folder on my desktop. For the most part, I don’t even need to open it. Just knowing it’s there brings me right back to where I need to be.
Fast forward one year. What do you want to have achieved for the Association?
First, I’d rather say, “What do WE want to have achieved for the Association?” It won’t be about what I have done.
I have sincere hope that we will be able to point to two or three things that have concretely gotten us closer to a new treatment or to a cure for this awful disease. Have we improved the levels of research dollars spent on an annual basis? Have we taken steps to improve FDA outcomes? (We’ll be weighing in very soon on the draft FDA guidance document for ALS drug development.)
I want us to look back in a year and know, without a doubt, we’ve made progress together –Association-wide, the combined team made up of chapters and national office staff – toward getting closer to a treatment and cure for ALS.
People living with ALS eventually lose the ability to speak. That means that preserving channels of communication is an important component of enhancing quality of life. The ALS Association – DC/MD/VA Chapter took this to heart when they initiated The Esther Lerner Brenner ALS Assistive Technology Lab in Maryland, which is designed to help people living with ALS communicate effectively for as long as possible.
“Our goal is to make sure you have the ability to communicate with not only your family and friends, but also with your doctors and therapists who are just getting to know you,” said Regan Flores, assistive technology specialist at The ALS Association – DC/MD/VA Chapter.
Did you know we have been using telemedicine since the 1960s? Neil Armstrong and his fellow astronauts wore medical monitoring devices developed by NASA during their first moon landing in 1969. Since then, the use of telemedicine has exploded. Over half of all U.S. hospitals now use some form of telemedicine through more than 200 telemedicine networks.
According to the American Telemedicine Association, telemedicine is the remote delivery of health care services and clinical information using telecommunication technology. Millions of people use telemedicine to stay out of emergency rooms and hospitals, and instead, receive medical services at home. Telemedicine is also a great way to bring medical services to rural areas.
As the health of people living with ALS declines over time, telemedicine could be integral in reducing barriers to treatment and improving overall care. With that in mind, integrating telemedicine into multidisciplinary ALS care is beginning to emerge, but few reports evaluate its technical and medical feasibility.