New Weekly Podcast, Connecting ALS, to Share Stories of Hope

On March 5, The ALS Association launched a weekly podcast, Connecting ALS, that will shine a national spotlight on the people, research, and policy issues central to the fight against ALS. 

Host Mike Stephenson, director of marketing and communications for The ALS Association MN/ND/SD Chapter, will be joined by co-host Jeremy Holden, communications director for The ALS Association, to discuss the latest in ALS research and technology developments, share updates and highlights of the Association’s advocacy efforts, and share personal stories that will resonate across the nationwide ALS community and beyond. Connecting ALS began in 2019 as a monthly podcast hosted by Stephenson and produced by Garrett Tiedemann for the MN/ND/SD chapter. 

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How the Walk to Defeat ALS Has Grown Over 20 years

When warriors in the fight against ALS came together in Union City, Tennessee, for their Walk to Defeat ALS®, they helped kick off The ALS Association’s 20th anniversary of the event. 

The Walk to Defeat ALS brings together people with ALS, caregivers, and advocates every year to keep momentum going in the fight against the disease. Drawing people of all ages and athletic abilities together to honor people who are affected by ALS, remember those who have passed, and to show support for the cause, these events help expand the programs and services that benefit people living with the disease in our local communities across the nation.

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High School Students Spread Awareness and Raise Money for ALS Research

When the Biology Honors class kicked off a special course to learn more about neurological diseases, they turned it into a unified effort to educate their community and raise over $3,000 for ALS research.

The ALS Association spoke to some of the folks behind the project. 

It all began with a partnership between Great Valley High School, the Live Like Lou Center for ALS Research at the University of Pittsburgh Brain Institute, and the Beating the Odds Foundation, a Pennsylvania nonprofit that encourages kids to achieve success in school and in life.  At the beginning of the last school year, starting in September 2018, the students took a special honors course written and led by Kathleen Crisi and Christina Medvec, who are biology teachers at Great Valley High. 

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Challenge Me to Stop ALS Before it Starts

By Sandrine Da Cruz, Ph.D.
Ludwig Institute for Cancer Research,
University of California, San Diego

One of the most significant results of the ALS Ice Bucket Challenge is the synergy it created in the ALS research community. The increase in funds the Challenge made available to research not only created more fundamental knowledge about ALS, it also spurred many global collaborations that further our capacity to identify targets and advance therapies.

ALS is an incredibly complex disease and it will take a community of researchers from all around the world to fully solve the puzzle. Joint research, cooperation and data-sharing have brought experts from diverse scientific fields together to contribute to comprehensive knowledge-building around the disease.

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Challenge Me to Broaden the Global Fight Against ALS

By Hemali Phatnani, Ph.D.
Director, Center for Genomics of Neurodegenerative Disease
New York Genome Center

Collaboration is critical to scientific research, which is why the Ice Bucket Challenge was so transformational to ALS research, particularly in the field of genomics.

When researchers are disconnected from each other, their research remains largely isolated, and science advances more slowly. When researchers frequently collaborate, they create networks that facilitate data-sharing and the exchange of ideas, enabling new approaches and technologies to emerge and spread more quickly and for the best ones to ultimately flourish.

This is particularly true in the field of genomics. The Ice Bucket donations have helped to support the infrastructure of the New York Genome Center’s Center for Genomics of Neurodegenerative Disease, which serves as an organizing hub of ALS data collection and analysis within the research community.

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Challenge Me to Finish What Was Started

On July 15, 2014, a small gesture of support by professional golfer Chris Kennedy on behalf of a family member living with ALS, went unnoticed by all but a few of his social media followers. Calling out his cousin Jeanette Senerchia of Pelham, NY, in support of her husband Anthony, Kennedy dumped a bucket of ice water on his head and challenged his network to either follow suit or make a donation to fight ALS. It was not until months later that the significance of his Facebook post would be credited as the start of the largest movement in medical history: The ALS Ice Bucket Challenge.

Chris Kennedy could not have foreseen the impact of his post. Senerchia accepted his challenge, posted her video and in turn, challenged her network to get drenched or make a donation to The ALS Association. Pat Quinn, a young man newly diagnosed with ALS in Yonkers, NY, took the challenge and passed the torch to Pete Frates of Beverly, MA, a former Boston College baseball player and team captain who was diagnosed with ALS at age 27. Frates’ involvement led to participation by Boston’s athletic community, where it immediately caught fire among the city’s professional athletes. The Red Sox, Bruins and Patriot athletes who took the challenge called on competing teams and celebrities to get involved. Before the summer was through, nearly every major sports team and celebrity A-listers such as Oprah, Jimmy Fallon, and Lady Gaga were posting their own ALS Ice Bucket Challenge social posts.

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