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.”
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.”
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.