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Thoughts About the Ice Bucket Challenge and Giving

Published in ChicagoNow September 8, 2014

My 8-year-old granddaughter, Maya, never met a challenge she could refuse. So, when her BFF called her out for the ice bucket challenge, of course she wanted to be filmed and Facebooked. But she is also a thoughtful child who wrote the words above on the calendar she made at school last year:

In case you can’t read it, she said,

“When I grow up I want to be the president of the United States of America. I want the United States of America to be a happy place. I’m going to make animals all over the United States of America safe. I’ll make sure everyone has a home. I’ll shorten the money budget for houses. I want to help the world.”

In another entry, she wrote about her dream for the future of the world,

“I wish people with disabilities could do things we can do. I wish it in my heart because my sisters have disabilities and I love them with my heart.”

The first time I saw the ice bucket challenge, it seemed like the cleverest fundraising idea ever for a worthy and much neglected cause, ALS. Donate $100 or dump a bucket of ice water over your head. But when it morphed into an Internet sensation, with celebrities dumping water over their well-coiffed heads, the cynic in me began to wonder.

Then Maya did it. At that point, I felt pretty sure there were two questions to ask the dumped-upon: Do you really want to raise awareness of and money for ALS? Or are you just having fun with the latest YouTube fad? Hopefully, the answer is yes to both questions. Like my young granddaughter, the participant does care about promoting ALS awareness and raising money in addition to craving a bunch of Facebook likes.

But why stop with ALS? There are so many causes worthy of awareness and support. Maybe the point of this craze is to remind us to give to the many worthy causes that touch our lives.

After Maya did the challenge, her parents asked her if there were other causes along with ALS that Maya wanted to support. They agreed that ALS was truly worthy. Our family personally knew Ben Byer, who died from ALS six years ago. But what about other causes close to our hearts?

Maya is familiar with a few that have touched her life directly. Her beloved cousin and BFF has cystic fibrosis. Her older twin sisters have been diagnosed as being on the autistic spectrum. So as long as she endured the ice water, why not ask for support for additional worthy causes that mean so much to her?

Maya thought this was a great idea, so here’s her personal list:

ALS Worldwide, established in 2008 by co-founders Stephen and Barbara Byer, is a not for profit, 501(c)(3) organization, dedicated to the support of Amyotrophic Lateral Sclerosis patients and families. ALS is also known as Lou Gehrig’s Disease and Motor Neurone Disease. The organization focuses on obtaining and providing information, advice, direction, support, guidance and, perhaps most importantly, hope. Their son, Ben Byer, a classmate of our son, lost his valiant battle against ALS on July 3, 2008.

CF Great Strides Walk 2014

Cystic Fibrosis Foundation, a cause near to our hearts because Maya’s cousin Ava (my granddaughter) has CF. The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for cystic fibrosis. It funds more CF research than any other organization, and nearly every CF drug available today was made possible because of Foundation support. It is a nonprofit donor-supported organization focusing on the development of new drugs to fight the disease, improve the quality of life for those with CF, and ultimately to find a cure. I know this is true from personal experience. Ava is part of the lucky 4% of CF patients who benefit from Kalydeco, a drug made possible by funds raised by this organization.

Apraxia -KIDS is also a cause that touches my family’s life as one of Maya’s sisters has severe apraxia and uses a special app on her iPad to express herself. Like my granddaughter, children with Childhood Apraxia of Speech (CAS) have fine motor skill delays and/or sensory processing difficulties. The Childhood Apraxia of Speech Association of North America (CASANA) is the only national nonprofit organization dedicated exclusively to the needs of children with apraxia of speech and their families.

Autism Speaks, an important educational and advocacy group working to support the one in 68 children diagnosed on the autistic spectrum as well as their families and adults with autism. We know many people who have family members on the spectrum, and this organization provides resources to help them find their rightful place in society.

What’s your personal list? Please give something today. If you are donating to a disease-related organization and want your money to go to research, just write “for research” on the memo line of your check or online donation. You don’t even need to dump water over your head.


by Laurie Levy
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