Inaugural Class of the Jane Calmes ALS Scholarship Fund Hails from 25 States

The ALS Association has awarded $225,000 in scholarships to 45 inaugural recipients of the Jane Calmes ALS Scholarship Fund. The Fund provides financial support to students impacted by ALS.

The first cohort of Fund scholars will receive $2,500 each semester for a total of $5,000 per year in support of post-high school education. Awards are renewable for up to three years or until a bachelor’s degree is earned or graduation is achieved.

Mark Calmes, vice-chair of The ALS Association National Board of Trustees, established the fund in honor of his wife Jane, who lived with ALS for eight years until her passing in August 2017.

Continue reading Inaugural Class of the Jane Calmes ALS Scholarship Fund Hails from 25 States

Results from Our ALS Community Survey

The ALS Association is pleased to share results from our recent community survey. We were interested in hearing about programs and services that people reported as being important, reasons why people were not accessing some programs, major challenges, and issues around medications. Information gained from the survey will be incorporated in to care services planning activities and will be used to inform strategic planning, priority setting, program outcomes, and program improvements. 

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Challenge Me to Live Life to the Fullest

How I Embrace the ALS “Challenge Me” Campaign

By Noel Levasseur
Person living with ALS

Five years ago, I joined millions of people around the world and took the ALS Ice Bucket Challenge. The Challenge took America by storm and fueled the biggest social media movement in history. At least 17 million people uploaded videos to Facebook to raise awareness and donate to ALS research, and over $115 million was raised for The ALS Association. 

At the time, many of us who took the Challenge knew little about ALS, myself included. I personally had no idea, other than Lou Gerhig had died from it. We also had no idea about the challenge ALS had in store for us. 

Three years after taking the Ice Bucket Challenge, in November of 2017, I was diagnosed with ALS. My life was forever changed. Trust me when I tell you, an ALS diagnosis changes everything in the blink of an eye. Every day moving forward, I would now face the biggest fight of my and my family’s life! A cruel disease with no cure… ALS. 

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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.

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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

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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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