Cover Stories

Stars on Ice: ALS Association St. Louis Regional Chapter

It’s hard to imagine losing control of your muscles and limbs, but for those with ALS (amyotrophic lateral sclerosis), it’s a daily reality. Often associated with baseball legend Lou Gehrig, the condition causes the neurons that control voluntary muscles to progressively die, and it currently affects thousands of Americans. While there is no cure, continuing research and updated therapies offer help and hope—and the ALS Association St. Louis Regional Chapter is part of that effort, says president and CEO Maureen Barber Hill.

In 2014, the national ALS Association captured headlines with its highly successful Ice Bucket Challenge, a playful social media campaign in which participants raised donations by posting videos of themselves getting doused with ice. The effort injected $115 million into the association’s research and patient care budget, and nearly $100 million of that has been committed to various projects, Hill says.

In 2015, the St. Louis chapter took the ice bucket concept a step further, turning it into an annual fundraising event complete with local celebrities in the ‘cold seat.’ (Yes, that’s who gets ‘dumped on’ during the evening.) This year’s Ice Bucket Bash is slated for Nov. 16 at the Four Seasons, with Kim and Joe Koenig serving as event co-chairs and cocktail hour entertainment provided by St. Louis native Erin Bode and her band. Proceeds will help fund ALS programs in eastern Missouri and central and southern Illinois that offer physical, emotional and financial support. “When a person is diagnosed with ALS, the cost to his or her family can be up to $250,000 per year,” Hill explains. “Our goal is to improve quality of life through case management, counseling, caregiver relief, loaning medical equipment, and nutritional and clinical support.”

Hill says the Ice Bucket Bash dress code is ‘casual cool,’ and the party promises to be an evening of laughter and fun. “Don’t expect the same old auction and chicken dinner at this event,” she jokes. “We’ve put that idea on ice! This year’s celebrities are a secret for now, but they will be revealed before the end of the summer.” Past notables have included former St. Louis Blues players Brett Hull and Bernie Federko and the St. Louis Cardinals’ John Mozeliak. The celebs sit on chairs in kiddie pools, and guests compete for the chance to ice them down on stage. “They really engage with the audience,” Hill says. “It might be the highest bidder who gets to do the dousing, or it could be a CEO’s employees who shower her with ice. It’s a lot of fun because it all evolves organically during the evening.”

It’s not just patients who benefit from the chapter’s fundraising efforts. Family members are cared for as well through important respite and support initiatives. “Event proceeds help us expand our in-home caregiver relief services,” Hill says. “We would love to triple the amount of assistance we can offer through that program.”

There is a real sense of urgency to find a cure for ALS because a diagnosis usually means a life expectancy of just two to five years, according to Hill. “The 2014 challenge allowed our national association to triple the amount of money invested in research,” she says. “As a result, five ALS-related genes have been identified in the past four years, and the first new ALS drug in two decades has been approved by the FDA. These developments are a big deal, and we think they signal an exciting new chapter in the fight against ALS.”

Pictured: Brett Hull gets doused at the Ice Bucket Bash.
Photo courtesy of the ALS Association St. Louis Regional Chapter

The ALS Association St. Louis Regional Chapter provides critical programs and services for ALS patients and their families. Pictured on the cover: Joe Koenig of World Wide Technology, Kim Koenig, incoming chapter board chair Josh Rogers of Fleishman Hillard, president and CEO Maureen Barber Hill and vocalist Erin Bode. For information about the Nov. 16 Ice Bucket Bash at The Four Seasons, call 314.432.7257 or visit alsastl.org.

Cover design by Julie Streiler
Cover photo by Colin Miller of Strauss Peyton Photography

Pictured Above: Brett Hull gets doused at the Ice Bucket Bash.

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