Community Matters with Scott Cordischi featuring "2025 CEO Soak" with Mauret Brinser, ALS-RI 5-31-25 Podcast Por arte de portada

Community Matters with Scott Cordischi featuring "2025 CEO Soak" with Mauret Brinser, ALS-RI 5-31-25

Community Matters with Scott Cordischi featuring "2025 CEO Soak" with Mauret Brinser, ALS-RI 5-31-25

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 The Ice Bucket Challenge is back! We welcome to the program, Mauret Brinser, Senior Vice President, Community Engagement of The ALS Association Rhode Island. Listen as Mauret challenges Scott to the 2025 CEO Soak Boston (Friday, August 8, 2025) at Boston College (Mass). Will he say "Challenge Accepted!"? Locally, we have been moved by Pete Frates who co-founded the successful "Ice Bucket Challenge" launched in 2014 with Pat Quinn, and Anthony Senerchia, all living with ALS. The campaign globally raised an impressive (estimate) $135 million for ALS in the United States, and $220 million worldwide. Participants poured a bucket of ice water over their heads and posted a video of it on social media, challenging others to do the same within 24 hours or donate to ALS. These donations helped facilitate a hopeful update. The FDA recently approved QALSODY™ (tofersen) as the first treatment targeting a genetic cause of ALS. Mauret shares a curious statistic, ALS and Veterans​​ Studies have shown that U.S. Veterans are about 1.5 times more likely to get ALS compared to people who were never in the service. You may also recall well known names, who have been afflicted with this condition. Individuals such as Roberta Flack, Stephen Hawking and Lou Gehrig, Gehrig the namesake for the term "Lou Gehrig's Disease". Their high public profile has significantly contributed to ALS awareness and research. However Mauret expresses her concern over the threat of federal funding being pulled, funding which is critical for studies with the hope of finding a livable solution to this debilitating condition.
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