The ALS Association Partners with GNS Healthcare to Apply Artificial Intelligence to Accelerate Answer ALS Research

August marks a month-long opportunity to raise awareness and move closer to a world without ALS. Our Every Drop Adds Up campaign builds on the idea that people coming together for a common goal can make the impossible happen, just as it did four summers ago when the ALS Ice Bucket Challenge soaked the world. Every person helped, every research project funded, every discovery made, every piece of legislation passed, and every story shared – it all adds up!

We recently announced that we’re providing new funding to allow GNS Healthcare to use artificial intelligence (AI) to create a comprehensive disease model to advance research into ALS. GNS Healthcare will use its powerful machine learning platform, called REFS, in conjunction with the rich Answer ALS patient datasets, which are accessible to clinicians and scientists throughout the ALS research community. The project will be led by Dr. Iya Khalil, chief commercial officer and co-founder of GNS Healthcare.

Answer ALS, under the leadership of Dr. Jeffrey Rothstein, executive director for the Answer ALS Research Program, is collecting data from 1,000 people with ALS to build a comprehensive picture of the disease that includes clinical, genetic, molecular, and biochemical information that is openly shared with the global ALS research community. Together, this information will yield thousands of petabytes of new ALS-specific information that requires analysis. Continue reading The ALS Association Partners with GNS Healthcare to Apply Artificial Intelligence to Accelerate Answer ALS Research

Sunny Brous Erasmus: ‘As Long as We’re Here, We’re in This Together’

August marks a month-long opportunity to raise awareness and move closer to a world without ALS. Our Every Drop Adds Up campaign builds on the idea that people coming together for a common goal can make the impossible happen, just as it did four summers ago when the ALS Ice Bucket Challenge soaked the world. Every person helped, every research project funded, every discovery made, every piece of legislation passed, and every story shared – it all adds up!

Sunny Brous Erasmus is a wife, daughter, “dog mama,” sister, aunt, and friend. She’s like her name – strong, full of life, and a very bright light.

Her mantra is “no apologies, no excuses, no regrets,” which helps explain why she considers Dr. Miranda Bailey (“Grey’s Anatomy”), kind of bossy and always in-charge, her soul sister.

Continue reading Sunny Brous Erasmus: ‘As Long as We’re Here, We’re in This Together’

This August, Every Story…Every Bid…Every Drop Adds Up

UPDATE: Due to popular demand, we’ve opened all ALS Auction items for bidding NOW. Visit http://www.alsauction.org today to bid on many great experiences, like a private batting practice session with Ryan Dempster, former Chicago Cubs pitcher and National League all-star! We’ll be adding new items to the auction each week, so check back often: www.alsauction.org.

August begins today, marking a month-long opportunity to raise awareness and support for the fight against ALS.

Four summers ago, the ALS Ice Bucket Challenge soaked the world, but we continue to fight for a world without ALS. In that time, The ALS Association has committed more than $96 million to our mission, including more than $84 million to research.

There are many ways for you to help spread the word and raise money to keep the momentum going.

Continue reading This August, Every Story…Every Bid…Every Drop Adds Up

How The ALS Association Speeds Innovation by Globally Funding ALS Research

Innovation plays a key role in The ALS Association’s fight to develop treatments and a cure for ALS and to empower people living with the disease to live their lives to the fullest. Throughout June and July, we have celebrated some of the key innovations helping us change the nature of ALS forever.

Research funded by The ALS Association helped develop the first mouse model that specifically expresses poly(GR), a type of dipeptide repeat protein associated with C9orf72, which uncovered a new ALS disease pathway. Dr. Leonard Petrucelli’s group at the Mayo Clinic in Jacksonville, Florida, recently published the research in Nature Medicine.

Continue reading How The ALS Association Speeds Innovation by Globally Funding ALS Research

Team Challenge ALS Representing Community in Quest for $2 Million Basketball Championship

When the Super 16 round of The Basketball Tournament tips off this weekend on ESPN, the ALS community will be represented by a team of hoopsters fighting for a chance to move on to the quarterfinals and secure the $2 million prize, all while fighting to create a world without ALS. Team Challenge ALS will donate $250,000 to the fight against ALS, if it wins the tournament.

This is the story of how this Team Challenge ALS team came together in its current form, and how it came to wear the names of people who have been affected by ALS on their jerseys.

In May 2002, Michelle Rozzen was starting her third year at San Jose State University when her father, David Rozzen, an engineer for KABC 7 in Los Angeles, was diagnosed with bulbar onset ALS.

“My world came tumbling down,” Michelle said. “My Dad, who was one of my best friends and supporters, was basically given a death sentence.”

Michelle and the rest of the Rozzen family became involved with The ALS Association Golden West Chapter and dedicated themselves to raising awareness and funds in support of the ALS community.

Over the course of the next two years, they stood by David as the devastating disease robbed him of his speech, movement of his hands and feet, and his ability to breathe and eat.

In June 2004, David lost his long and difficult battle with ALS. The Rozzen family became even more committed to fuel the search for effective treatments and cures.

“I know that my dad had his tough days, but he chose to never give up,” Michelle said. “I did everything in my power to find a cure then, and still continue to this day. When I was a senior in college, I created the red ‘Never Give Up’ ALS Association wristband campaign. Since November 2004, over 1 million ‘Never Give Up’ wristbands have been sold worldwide, and my family has helped to raise over $6 million for ALS research to The ALS Associations around the country.”

Ten years later, in 2014, Sean Marshall was among the many thousands of people who showed support for the ALS community by doing the ALS Ice Bucket Challenge. However, for Sean, it was personal. Pete Frates, Sean’s former roommate from Boston College, was one of the founders of the global grassroots movement.

Sean later decided that he wanted to do more to help the fight against ALS. After many years as a European basketball player, in 2017 he formed a team comprised of friends of Pete Frates and became their general manager in The Basketball Tournament (TBT), an annual tournament that pits 72 teams of amateur and former professional basketball players against each other.

The winning team of TBT shares a $2 million prize. If Team Challenge ALS wins the $2 million prize, the team has decided to donate $250,000 of the prize money to help aide the fight against ALS.

“The inspiration behind our team is Pete Frates,” Sean said. “Honoring him was our initial starting point—to do something special for Pete and his family. The deeper I got into this, and the more people I met that have been affected by ALS, it then became something bigger than just one person. We decided that it was our duty with the Team Challenge ALS name to represent the entire ALS community.”

Fast forward to last summer, when Sean connected with Michelle on Instagram prior to TBT. Once Michelle had learned about what this team and what the TBT was all about she sent him an email. It explained her direct relationship to ALS and she told Sean she wanted to be a part of Team Challenge ALS, and to help spread the word about the team and what they were doing for the ALS community!

Team Challenge ALS-Michelle Rozzen1
Team Challenge ALS at Cal State Los Angeles, Round 1 (Photo credit: TBT)

Sean spoke to the other Boosters, the Frates’ family, and the coaches and received their approval for Michelle to serve as Booster for Team Challenge ALS. She was beyond honored and grateful for the opportunity to once again help Strike Out ALS! Michelle quickly set up the team’s website and designed “Team Challenge ALS Never Give Up” wristbands. They donate a portion of their proceeds to ALS research.

Team Challenge ALS is back this summer to try to win The Basketball Tournament after finishing last year as the TBT runner-up.

Last summer, every player on the team had “Frates” printed on the back of their jerseys. This year, the team’s general manager Sean Marshall will wear “Frates” on his jersey, but each player will have a different name on the back of their jerseys to honor other people and their families who have been diagnosed or affected by ALS.

Michelle asked Team Challenge ALS athlete, Ivan Aska, a U.S. Virgin Islander-Puerto Rican, who just finished his sixth season as a professional European basketball player, to wear her dad’s name, David Rozzen. Seeing him wear his jersey brought tears to her eyes.

Team Challenge ALS-Michelle Rozzen2
Ivan Aska honoring David Rozzen (Photo credit: Perris Blackwell)

Michelle became emotional, but she is so honored and excited to watch Team Challenge ALS at The Basketball Tournament. She will be seated on the bench with the team as a proud Booster and team massage therapist.

Team Challenge ALS and Sons of Westwood will meet in Atlanta this Saturday, July 28 at 3 p.m. ET on ESPN for the Super 16. The winner will advance to face either Gael Force or Eberlein Drive on Sunday, July 29 at 7 p.m. ET on ESPN2.

The TBT semifinals and championship game will be held in Baltimore on Thursday, August 2 and Friday, August 3.

To support the team, you can order Team Challenge ALS merchandise or make a direct donation in their honor.

Ticket Sales: https://www.freshtix.com/organizations/thetournament
Use the code ATLANTA for a 50% discount (half off).
For more information on Team Challenge ALS: http://thetournament.com/teams/team-challenge-als
Team Website: https://www.teamchallengeals3.com
Instagram: https://www.instagram.com/teamchallengeals3
Facebook: https://www.facebook.com/TMChallengeALS/
Twitter: https://twitter.com/tmchallengeals

Memory Boxes Help Kids Impacted by ALS Cope with Loss

Innovation plays a key role in The ALS Association’s fight to develop treatments and a cure for ALS and to empower people living with the disease to live their lives to the fullest. During June and July, we are celebrating some of the key innovations helping us change the nature of ALS forever.

A diagnosis of ALS takes its toll in many ways. The person living with ALS eventually loses the ability to move, eat, speak, and breathe. But the effects of this disease don’t end there. Witnessing a loved one’s experience and being a caregiver have profound effects on family members and children, too.

Thankfully, your support helps give hope and provide compassionate care.

For example, The ALS Association St. Louis Regional Chapter provides one-on-one counseling for kids of all ages affected by ALS. The chapter recently expanded the program by providing hand-carved Circle of Life Boxes to every child living with a person with ALS who is registered with the chapter.

These “memory boxes” are used as part of grief work and counseling to help capture feelings surrounding loss.

Continue reading Memory Boxes Help Kids Impacted by ALS Cope with Loss

Support for ALS Disability Insurance Access Act Grows Following Advocacy Conference

We need your help! Now is the time to urge your representatives and senators to waive the five-month waiting period for Social Security Disability Insurance (SSDI) benefits for people living with ALS.

Under current law, people disabled with ALS who qualify for SSDI must wait five months before receiving SSDI benefits. Every patient must wait regardless of the level of disability or how fast the Social Security Administration (SSA) approves their claim.

The ALS Disability Insurance Access Act (S.379/H.R.1171) would eliminate that five-month waiting period for people with ALS to receive SSDI. People with ALS would receive their SSDI benefits immediately after being approved by the SSA.

Continue reading Support for ALS Disability Insurance Access Act Grows Following Advocacy Conference