Rare Disease Report

Ice Bucket Challenge Being Represented in the Smithsonian

NOVEMBER 30, 2017
Mathew Shanley
The Smithsonian’s National Museum of American History’s “Giving in America” exhibit will feature a prominent piece of recent history from the rare disease community.

The long-term exhibit opened on November 29 and prominently features a recently collected bucket from professional golfer Chris Kennedy, intended to represent the ALS Ice Bucket Challenge, a social media phenomenon that began to go viral in the summer of 2014. It will showcase 4 major themes of American philanthropy, each focused on a specific question pertaining to generosity. The themes include: “Who Gives?” “Why Do We Give?” “What Do We Give?” and “How Do We Give?”

The ALS Ice Bucket Challenge was initiated by Kennedy, who challenged his cousin Jeanette Senerchia, whose husband Anthony suffered from ALS, to dump a bucket of ice water over her head. Since that day, an estimated 17-million people have participated in the campaign, and more than $89 million has been dedicated to research to advance the search for potential therapies.

Anthony Senerchia, 46, died on November 25, 2017, but his memory lives on through the campaign that was started with him in mind.

“Philanthropy is not unique to the United States, but Americans’ ideals of participation, equality, resourcefulness and shared responsibility have shaped a distinctive form of giving in our nation,” said John Gray, director of the museum, in a press release. “One of the major goals of this exhibition is to inspire future generations to continue to give of their time, talent and resources.”

Since the initiation of the ALS Ice Bucket Challenge, 4 new genes associated with the disease have been discovered and the research budget of The ALS Association has nearly tripled, making it the second-highest non-profit research funder, behind only the U.S. Government.

In August, Rare Disease Report sat down with representatives from The ALS Association’s Greater Philadelphia Chapter, Nurse Coordinator Gail Hausman and Social Worker Anne Cooney. The impact that their organization has on patients with ALS, as well as the families of patients, can be felt in the videos below:

Per the Centers for Disease Control and Prevention (CDC), an estimated 16,000 people in the U.S. suffer from ALS, or Lou Gehrig’s Disease.

For more on the Ice Bucket Challenge and other actions that can be taken on behalf of rare disease advocacy, follow Rare Disease Report on Facebook and Twitter.

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