Meet Edward Barbieri: A 2018 Milton Safenowitz Postdoctoral Fellow

Our Milton Safenowitz Postdoctoral Fellowship Program continues to support young scientists and is the only program of its kind specifically funding early ALS postdoctoral fellows.

The awards were founded in memory of Mr. Safenowitz by the Safenowitz family – through The ALS Association Greater New York Chapter. The program encourages young scientists to enter and, importantly, to remain in the ALS field.

We are proud that 76 percent of the postdoctoral fellows we fund go on to start their own labs to continue studying ALS and mentor other young ALS researchers. The rest of our Safenowitz fellowship program graduates go on to careers in the biomedical industry, nonprofits, and medical writing, with many still staying in the ALS space.

This year, we are supporting five new postdoctoral fellows out of a highly competitive applicant pool. Over the next few weeks, we will highlight each fellow – their dedication and unique contributions to ALS research, as well as their interests outside of the lab.

We recently talked with Dr. Edward Barbieri from the University of Pennsylvania to learn about his unique research project aimed at identify particular networks of chaperones that can reverse the toxic effects of ALS-associated proteins in cells.

Continue reading Meet Edward Barbieri: A 2018 Milton Safenowitz Postdoctoral Fellow

Challenging Youth to Join the Fight

The ALS Association is launching a campaign to engage kids and teenagers in the fight against ALS, issuing the ALS Youth Challenge and celebrating the first-ever ALS Youth Action Day.

Our chapters across the country will be partnering with youth organizations in their communities to identify future activists and philanthropists who will help to defeat ALS by accepting the ALS Youth Challenge.

On May 19, we will recognize the first annual ALS Youth Action Day, a day where kids can set aside time to take the ALS Youth Challenge, raise money and awareness for the fight against ALS, and spread the word on social media.

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Handling Hospital Visits When You Have ALS

Editor’s note: This article was republished with permission from The ALS Association St. Louis Regional Chapter.

Even though ALS is a disease that has its own health implications, people with ALS are not immune from other injuries or medical issues. Individuals with ALS can still get sick or hurt themselves in ways unrelated to the disease.

Or, people with ALS might have complications directly related to the disease that warrants a visit to the hospital.

When an individual with ALS goes to the hospital or the emergency room, they face additional obstacles with hospital staff who may not fully understand how ALS affects a person’s breathing, speech and movement. Extra measures should be taken to ensure people with ALS are cared for in the right way.

Here are some tips on what to look out for and how to prevent misunderstanding in the hospital or emergency room.

Continue reading Handling Hospital Visits When You Have ALS

New Education Guides Help to Lessen Fear, Uncertainty for Youngest Affected by ALS

ALS can be confusing, scary, embarrassing, and overwhelming – for people living with the disease as well as for the youth within their families. Young people need age-appropriate details about ALS to help reduce some of the fear and uncertainty surrounding the disease.

That’s why we created our new youth education guides.

Many young people fear the unknown and may feel responsible for helping their loved one. Children often feel helpless and don’t understand what is happening to their loved one with ALS.

Children and teens who provide direct caregiving to their loved one with ALS, and emotional support to adults and siblings within the family, can struggle with feelings of isolation and depression and even a decreased self-worth.

Preteens and teenagers may have difficulty explaining ALS to their friends and often don’t know how they can help their loved one living with the disease.

And adults and other family members often grapple with how they can explain the disease openly and honestly.

Continue reading New Education Guides Help to Lessen Fear, Uncertainty for Youngest Affected by ALS

ALS Disability Insurance Access Act Reintroduced in 116th Congress

Bipartisan Legislation Eliminates Five-Month Waiting Period for SSDI Benefits for People Diagnosed with ALS

The ALS Disability Insurance Access Act was reintroduced in the 116th Congress this week as S.578 in the Senate by Senator Sheldon Whitehouse (D-RI) and Senator Tom Cotton (R-AR). Representatives Seth Moulton (D-MA) and Peter King (R-NY) introduced the companion bill in the House as H.R.1407.

The bill was introduced with strong bipartisan support from 40 senators and 90 representatives.

Last year, thanks to your advocacy, the bill gained considerable momentum. Within three months of the 2018 National ALS Advocacy Conference, more than one-third of Congress supported the bill. Within seven months, for the first time ever, the bill was considered for passage through the Senate via unanimous consent.

Multiple research studies indicate that people who have served in the military are at far greater risk of developing ALS and dying from the disease than those with no history of military service.

The ALS Association is honored to work with more than 20,000 people with ALS annually, including active duty military and veterans, through our nationwide system of chapters.

Continue reading ALS Disability Insurance Access Act Reintroduced in 116th Congress

Guest Post: Love Changes Everything

By Lorene Lee
Living with ALS since 2010

This is the fifth in a series of posts from people living with ALS who are featured in our #VoiceYourLove campaign. Lorene composed this message using assistive communication technology with a visual-tracking system. She typed the words, one letter at a time, using her eyes.


In my first attempt to write this letter to you, I had written a few paragraphs on my marriage and life. But later, I got to thinking it sounded just like any other couple, going through the usual everyday problems. The next morning, I was going to change everything. When I got to my device, it was erased. What happened is beyond me. This is a problem I sometimes face with this computer. So I will begin again with what I really want to express.

When I first met Tony in 1982, he really helped me to blossom (he does not acknowledge it- but it is the truth)! My husband Tony and I have been married for 32 years and raised our two children, Andrea and Brian, together. Our home is my sanctuary and I am happy that we have had so many happy memories here. Like when my daughter came tearing down the sidewalk in her Big Wheel, at age 5. And when our son got in serious trouble around age 6, with tears flowing, he sobbed and said, “Don’t kick me out! I need a place to live, too!”.

Fast forward to getting them ready for prom nights and having so many family and friend gatherings. There is a lot of heart around my house.

When I was first diagnosed with ALS in 2010, I knew it was going to be serious because of all the different tests I took. So, in a sense, I was prepared for bad news. It was Tony that took it so hard. He had lost both his sister and his father earlier that same year, and we were also caring for his 16 year-old niece. It was an unbelievable time in our story.

By 2012, I had lost my ability to speak and now rely on a speech-generating device with an eye-tracking system to communicate.
Continue reading Guest Post: Love Changes Everything

Guest Post: Cherish Every Moment with Those You Love

By Miles McConnell
Living with ALS since 2015

This is the fourth in a series of posts from people living with ALS who are featured in our #VoiceYourLove campaign.


This time of year brings memories of two important days in my life.

The first memory is from February 13, 1999, the day I proposed to my incredible wife, Dubie. We had first connected upon the strong suggestion of my best friend, who said that there was a girl that I had to meet that day. He was right and ever since I did, I was sure that we would be together forever.

After a few years of dating, the time finally came to make it permanent. I asked her to join me on our favorite hike, but (for reasons I will reveal later), I had to cancel at the last minute. We made the same plan for the next day, yet again, I needed to cancel. The following day, I attempted again but Dubie said she was “busy”. I did my best to convince her otherwise but she had had enough of my cancellations. I was left with no choice but to go to her office and tell her that I wasn’t going to leave until she said she would at least have dinner with me that evening in my San Francisco apartment. Finally, much to my relief, she relented.

We had dinner, during which I tried to lighten the mood by steering the conversation toward “Remember when…” and talked about funny and memorable moments we had shared. After dinner, I made dessert and to my surprise upon returning to the living room, she had turned on the TV and was falling asleep! I woke her up with dessert and an orchid plant to which I tied a wax mold of a ring I had designed for her. It took her a few moments to realize what was happening. By then, I was down on one knee, and proposed. She cried, said yes, and that was the beginning of our incredible adventure together.

Continue reading Guest Post: Cherish Every Moment with Those You Love