What People With ALS Want You to Know About ALS

Challenge Me to Educate the World About ALS

We launched the Challenge Me campaign last week. Challenge Me picks up where the ALS Ice Bucket Challenge left off. This time, we are challenging the world to do anything and everything they can to help end ALS.

“Challenge Me” is a concept well known to people living with ALS who face an insidious foe every single day. Pat Quinn, who co-founded the ALS Ice Bucket Challenge with Pete Frates in 2014, talks about affirming his readiness to take on whatever ALS may throw at him that day. He says “Challenge Me” captures the spirit and determination of people with ALS.

We asked some other folks in the ALS community what they want you to know about ALS. Here is what they said.

Continue reading What People With ALS Want You to Know About ALS

Meet Jorge Gomez-Deza: 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. Jorge Gomez-Deza with the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)/National Institutes of Health (NIH) to learn about his unique research project, which has the ultimate goal of identifying a druggable target that prevents neuronal death.

Continue reading Meet Jorge Gomez-Deza: A 2018 Milton Safenowitz Postdoctoral Fellow

New Jane Calmes ALS Scholarship Fund Helps Students Financially Impacted by ALS Pursue Higher Education

The ALS Association is pleased to announce a new scholarship program that will fund up to $5,000 per year for at least 30 students whose personal or family finances are compromised by the financial burden of ALS.

The Jane Calmes ALS Scholarship Fund was established by Mark Calmes, vice chair of The ALS Association’s National Board of Trustees. The scholarship fund is named in honor of his late wife, Jane, who fought ALS for eight years and passed away in August 2017.

“Jane amazed me every day,” Mark says. “She was a fighter who battled three illnesses in a row – a silent heart attack, breast cancer, and then ALS. After she died, I began to think of ways to honor her courageous spirit and compassion. The idea of a scholarship program resonated with me because Jane was always keen on the lifelong benefits provided by education.”

Continue reading New Jane Calmes ALS Scholarship Fund Helps Students Financially Impacted by ALS Pursue Higher Education

Meet Andrei Ursu: 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. Andrei Ursu from The Scripps Research Institute (Florida Campus) to learn about his unique research project focused on targeting the most common form of genetically inherited ALS, known as c9ALS, with rationally designed lead medicines.

Continue reading Meet Andrei Ursu: A 2018 Milton Safenowitz Postdoctoral Fellow

Meet Alyssa Coyne: 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. Alyssa Coyne from Johns Hopkins University to learn about her unique research project focused on understanding the molecular mechanisms underlying the most common form of familial ALS.

Continue reading Meet Alyssa Coyne: A 2018 Milton Safenowitz Postdoctoral Fellow

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

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