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 ALS Awareness Month, we’re sharing stories nearly every day in May about how you can Raise Your Voice to join the fight against ALS. Today, on the heels of this week’s successful National ALS Advocacy Conference, we’re talking about why we need you to Raise Your Voice as an ALS Advocate.
Why do we advocate? Why do we share our stories? Why do we write letters and ask our friends and family to do the same?
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 helping to make the lives of people with ALS better, the fundraisers and participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the fifth profile in that series.
Thirty-seven-year-old Melissa is a mother to Anthony (14) and Lauren (9). She’s been living with ALS for two years.
“I can’t say that I parent any different [since being diagnosed with ALS],” Melissa said. “As a parent, you have to pick and choose your battles and I’ve never been one to sweat the small stuff. But I can see how much my diagnosis has made my children grow and mature.”
She said Anthony and Lauren have been very brave and their “unconditional love” gives her the strength to keep fighting every day. Her focus is on trying to live every day to the fullest and show Anthony and Lauren how much she loves them.
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.”
Since NIH is the largest funder of ALS research in the world, any increase to their budget could also mean an increase in funding for ALS research. In fiscal 2017, the NIH spent $55 million on ALS research, up from $52.2 million in fiscal 2016.
“It’s a huge win for The ALS Association and the ALS community to see such a significant NIH budget increase,” said Calaneet Balas, president and CEO of The ALS Association. “We’re confident the increased budget will enable new ALS research, which is critical to ending this devastating disease, and thank our lawmakers for their hard work to make it possible. This gives our advocate community a boost, increasing our momentum to work hard toward our appropriation goals for fiscal year 2019.”
The ALS Association and its vast network of ALS Advocates are committed to supporting increased funding for the NIH, especially for the National Institute of Neurological Disorders and Stroke (NINDS), the lead institute for ALS research. Increased funding for the NIH is a consistent part of the Association’s legislative priorities each year.
The ALS Association is second to the NIH for ALS funding globally, with a $18 million research budget in fiscal year 2019 to fund external grants to top ALS researchers around the world.
The ALS Association is pleased that, as part of the increase, the NIH’s BRAIN Initiative received a $140 million investment. The BRAIN Initiative is aimed at developing tools, technologies, and foundational knowledge to understand how the brain’s circuits code and store information.
The Initiative’s work includes mapping the brain’s circuits and recording and modulating brain activity using cutting-edge technologies. We believe many of the BRAIN Initiative’s research projects will add knowledge to understanding the disease pathways underlying ALS.
The ALS Association will bring together more than 500 ALS Advocates in Washington, D.C., at the annual National ALS Advocacy Conference next month to continue to advocate for increased NIH funding, along with our other important legislative priorities.
For more information about our legislative priorities for the conference and this fiscal year, click here.
The NIH has posted its Congressional Justification and materials related to the administration’s fiscal year 2019 budget request for the agency to the NIH Office of Budget website at: https://officeofbudget.od.nih.gov/br.html.
Do you have a passion for making your voice heard and empowering others? Do you want to make a difference in the lives of people with ALS?
The 16,000+ advocates for The ALS Association are people living with ALS, family members, friends, caregivers, researchers, scientists, and healthcare professionals who are ready to see a world without ALS.
They are willing to ask their elected congressional representatives to provide funds for research toward treatments and a cure for ALS, and to provide better access to care and services for those affected by the terrible disease. They’re making a real and lasting impact on our ALS community.
There is no better time than today to become an ALS Advocate! Every effort inspires hope and helps bring us one step closer to a world without ALS.
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.