Meet Maria Purice: A Bright, Young ALS Researcher

The ALS Association is happy to continue our tradition of supporting bright, young scientists in ALS research through our Milton Safenowitz Postdoctoral Fellowship Program. These awards encourage young scientists to enter and, importantly, to remain in the ALS field.

We are proud that 90 percent of our funded postdoctoral fellows go on to start their own ALS research labs and continue to mentor more young scientists, further adding innovative ideas to the field.

This year, we are supporting six new postdoctoral fellows out of a highly competitive applicant pool. This is the third in a series of six articles highlighting the dedication and unique contribution each fellow makes to ALS research, while getting to know the person behind the lab coat.

Today, we sit down with Dr. Maria Purice from St. Jude Children’s Research Hospital to learn about her unique research project aimed at understanding the disease pathways leading to both inherited and sporadic (non-inherited) ALS.

Continue reading Meet Maria Purice: A Bright, Young ALS Researcher

Ice Bucket Dollars at Work: New Method Developed to Help Improve ALS Clinical Trial Stratification

The ALS Association is committed to helping improve clinical trial design, in order to increase trial efficiency that will more quickly lead to effective therapeutics.

We awarded Dr. David Ennist and colleagues at Origent Data Sciences, Inc. two grants to support research exploring how machine learning algorithms, a type of computational tool, can optimize clinical trial design. Dr. Ennist’s work, recently published in the journal Annals of Clinical Trial and Translational Neurology, looks closely at optimizing patient randomization into clinical trials.

Continue reading Ice Bucket Dollars at Work: New Method Developed to Help Improve ALS Clinical Trial Stratification

Introducing…Calaneet’s Corner

On December 7, 2017, Calaneet Balas began her role as president and CEO for The ALS Association.

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.

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Calaneet (second from right) at the 2018 ALS Advocacy Fly-In, March 20

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.

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Calaneet on a trip to the Galapagos Islands

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.

ALS Advocacy Fly-In a Huge Success, Lead Up to National ALS Advocacy Conference

Held March 20-21, the annual ALS Advocacy Fly-In was very successful, as The ALS Association’s executives, staff, and board members acted boldly to fight for a cure for ALS.

On March 20, Fly-In attendees heard presentations from numerous speakers, including Mark Vieth from CRD Associates, Dr. Steve Landers from the Visiting Nurse Association Health Group, Inc., and leaders from The ALS Association’s Iowa and Greater Philadelphia chapters.

On March 21, despite about four inches of snow falling in Washington, D.C., more than 130 productive congressional meetings took place. The slideshow below includes photos from some of those meetings.
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Amylyx Pharmaceuticals Announces Open Label Extension of CENTAUR Phase II Clinical Trial

The CENTAUR phase II clinical drug trial, sponsored by Amylyx Pharmaceuticals and funded by ALS Ice Bucket Challenge donations, began an open label extension, giving people with ALS who completed their trial period an opportunity to continue taking the drug, AMX0035.

Continue reading Amylyx Pharmaceuticals Announces Open Label Extension of CENTAUR Phase II Clinical Trial

Local Assistive Technology Lab Improves Lives of People Living with 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.

Continue reading Local Assistive Technology Lab Improves Lives of People Living with ALS

Meet Yue Li: A Bright, Young ALS Researcher

The ALS Association is happy to continue our tradition of supporting bright, young scientists in ALS research through our Milton Safenowitz Postdoctoral Fellowship Program. These awards encourage young scientists to enter and, importantly, to remain in the ALS field.

We are proud that 90 percent of our funded postdoctoral fellows go on to start their own ALS research labs and continue to mentor more young scientists, further adding innovative ideas to the field.

This year we are supporting six new postdoctoral fellows out of a highly competitive applicant pool. This is the second in a series of six articles highlighting the dedication and unique contribution each fellow makes to ALS research, while getting to know the person behind the lab coat.

Today, we sit down with Dr. Yue Li from Scripps Research Institute – Florida to learn about his important research project studying how specific RNA-protein interactions contribute to ALS disease.

Continue reading Meet Yue Li: A Bright, Young ALS Researcher