With ALS, Every Day Adds Up

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, research project funded, story shared, discovery made, piece of legislation passed, and auction bid placed – it all adds up!

For people living with ALS and their caregivers and family, every day adds up.

ALS is a journey that begins months, even years, before a diagnosis. Because there’s no definitive test for ALS, doctors must run through a battery of tests, ruling out other potential syndromes, conditions, and diseases before making a diagnosis of ALS.

It’s a journey that, for many people diagnosed with ALS, continues through the five-month waiting period they qualify for Social Security Disability Insurance.

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ALS Researcher Living With ALS Continues to Work Toward a Cure

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, research project funded, story shared, discovery made, piece of legislation passed, and auction bid placed – it all adds up!

Dr. Rahul Desikan is incredible. He’s a prominent researcher of neurodegenerative diseases, including ALS, as well as a loyal husband, father, son, and friend. And on February 17, 2017, in a cruel twist of fate, he became a person with ALS.

Dr. Desikan entered the research and medical field at Boston University in Massachusetts, obtaining both his M.D. and Ph.D. He then completed his diagnostic radiology residency at University of California, San Diego (UCSD) before moving on to University of California, San Francisco (UCSF) for his neuroradiology fellowship.

In the fall of 2016, after years of hard work, he was offered an assistant professorship, along with his own research lab, at UCSF.

Continue reading ALS Researcher Living With ALS Continues to Work Toward a Cure

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’

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

Guest Post: Steven’s Stompers and Bladen County Aim for a Cure for ALS

By Ann Mason, Cousin and Steven’s Stompers Team Member

The story of Steven’s Stompers begins with Steven Davis.

Steven is a lifelong resident of Bladen County, N.C., an avid outdoorsman, a pipe fitter by trade, and an outstanding athlete. He began noticing symptoms in February 2012 and was diagnosed with ALS by a neurologist on April 30, 2012, at age 34.

Six years after his diagnosis, Steven’s physical abilities have been severely limited by the disease’s progression. He is now confined to a wheelchair and depends on assistance for all daily activities.

He moved back into his childhood home so his parents, Kenneth and Gail Davis, and his sister, Sandra Robbins, could be his primary caregivers. (Valuable caregiving support comes from the staff at Lower Cape Fear Hospice.)

In 2013, Sandra initiated Steven’s Stompers in honor of Steven to raise awareness and funds for The ALS Association North Carolina Chapter through the Fayetteville Walk to Defeat ALS. Family and countless others touched by the effects of ALS joined the Steven’s Stompers team.

Continue reading Guest Post: Steven’s Stompers and Bladen County Aim for a Cure for ALS

Guest Post: Through Triathlons, I Can Make a Difference

By Heather Grahame

One day you find you’re having trouble tying your shoes and buttoning your shirt. After many months, numerous doctor visits, and a battery of tests, you’re told you have ALS.

An ALS diagnosis is unbelievably crushing. The impact is impossible to fully appreciate until it hits you or someone you know. The disease is a monster, and it only has one direction. You progress until you can no longer eat, speak, walk, or breathe. Research into finding a cure is vital. That’s why I run, bike, and swim.

My brother, Tom, was diagnosed with ALS in October 2016. He and his wife, Jan, are responding as positively as possible.
Tom has decided to use his ALS as a means of advancing scientific research. He researched ALS in depth and, with the help of his ALS doctor at Georgetown University, chose to take a drug called Tasigna. The drug was originally developed to treat cancer, but it seems to have slowed his progression and reduced some of his symptoms.

Continue reading Guest Post: Through Triathlons, I Can Make a Difference

Watch “Mr. Connolly Has ALS” Online Now!

“Life is full of challenges,” said Gene Connolly. “We get little say in what happens to us, but everything to say in how we deal with it. In fact, our response will define us.”

The short film, “Mr. Connolly Has ALS,” about a beloved Concord High School (Concord, N.H.) principal’s journey with ALS and his 14th and final year at Concord, had its public television broadcast debut on June 11 and is available to stream online throughout the U.S. until July 11.

Documentary filmmaker, Dan Habib, beautifully captured Gene Connolly’s positive spirit and humor as his disease progressed and he lost the ability to walk and speak. During the film, Gene, an educator for more than 35 years, sits down with some of the 1,600 students he served as principal, to answer their questions and give some final advice.

Continue reading Watch “Mr. Connolly Has ALS” Online Now!