Monthly Archives: November 2006

Mom’s Ebay auction benefits CdLS

Here’s your chance to own a custom hand-painted Fenton GlassArt Ruby Basket (see below) and help people with CdLS.  This brand new, artist-signed piece has been donated for auction on Ebay by Vicki Fisher in honor of her daughter Marci, who has CdLS. It even features a CdLS cube on the bottom. To view it and go to the auction, click here.

 

The auction ends Monday, December 4. All proceeds go to the CdLS Foundation.

 

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Special gifts for special children

If you’re buying holiday gifts for a child with CdLS, there are free resources for picking out the right toys. An excellent web site that identifies and rates toys for children with special needs is AblePlay.

 

The site scores toys in four disability categories: physical, cognitive, sensory and communicative. A review of each product and information on where to buy it is also included. 

 

Here are some other resources for buying toys for children with disabilities:

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Make your holiday shopping count


The holiday shopping frenzy kicks off Friday. If you prefer a cozy chair in front of your computer to navigating your way through a crowded mall, then consider shopping through iGive this holiday season (and throughout the year).

It’s a win-win deal. You get to shop in the comfort of your home, and the Foundation receives a portion of the purchase price (up to 25% in some cases).

You can shop at more than 600 online stores, including Barnes & Noble, Brookstone, Eddie Bauer, Lands End, LEGO, Office Depot, and QVC. Simply go to www.iGive.com, register and pick CdLS as your charity. Worried about SPAM? Don’t worry, iGive does not sell its list.

The holidays are also a great time to stock up on CdLS items. You can purchase coffee mugs, messenger bags and shirts at the CdLS Store (http://www.cafepress.com/cdlsshoponline). These great gift items spread awareness of CdLS, and the Foundation receives a percentage of all sales.

Happy shopping!

 

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Way to go Team CdLS!

Team CdLS ran, and survived, the Chicago Marathon October 22. All 15 members completed the race. Bill Weidman of Lynnefield, MA, came in first among the group, crossing the finish line in 3:01:15. You can view a slideshow of the team at http://www.flickr.com/photos/64094128@N00/show/.  

The runners raised more than $32,000, to date, for the CdLS Foundation. They also raised a whole lot of awareness of CdLS. Check out the front page newspaper articles on Team Captain Beth Smisloff at www.cdlsusa.org/teamcdls.

Marathon Facts:

  • More than $8.3 million was raised for charities.
  • 33,633 people finished the 26.2 mile course.
  • 11,000 completed the marathon for the first time.

PS- don’t forget to subscribe to the Water Cooler by email. You’ll get new posts delivered right to your inbox. To sign up, just click on the link below the CdLS cube.  

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December 6th – A Day For Miracles

The CdLS Foundation has been nominated for a third consecutive year to take part in Miracle Day, an enormous fundraising event hosted by CIBC World Markets (a bank/financial firm) on the first Wednesday of December each year.

Miracle Day is powered by the contribution of trading commissions on this special day (December 6th this year). Those contributions are then given to a fortunate group of children’s charities, including, the CdLS Foundation.

But that is not all. YOU and I can make an impact by encouraging our friends and family who work in the financial markets to designate that their commissions on trades with CIBC also benefit the CdLS Foundation.

What? Your broker friend does not usually trade with CIBC? He or she can still participate in Miracle Day through “step out” trading. Yeah, I don’t know what that is either, but our professional friends will. They can contact CIBC for specific info and to make appropriate arrangements.

If you have any questions or, better yet, you want to brag about how much money you helped raise through this year’s Miracle Day, please let me know.

 Darrell

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Take action for CdLS

For the first time in its 25-year history, the Foundation has asked Congress to support our work, but we need your help. 

Before Thanksgiving, please call, email or fax (don’t mail; due to security, letters to Congress are held up for weeks) your U.S. Senators and Representatives. Ask them to tell Connecticut’s Congressional members—especially Reps. Nancy Johnson and Rosa DeLauro and Senators Christopher Dodd and Joe Lieberman—to designate money for the Foundation in the Labor/HHS Appropriations Bill during Conference. The requested funding would be used to:

  1. Create materials and opportunities to better inform and educate the medical community and the public about CdLS and available resources for diagnosis and support;

  2. Develop a video and handbook of practical strategies for managing manifestations of CdLS;

  3.  Develop Spanish-language materials regarding CdLS; and,

  4.  Support a multi-disciplinary diagnostic clinic to be conducted four times annually.

You can find your Congressional members names and contact info at www.house.gov (for the U.S. House of Representatives) and www.senate.gov (for the U.S. Senate).

Please, help us make a difference in the lives of children with CdLS. If you have questions, contact Marie at outreach@CdLSusa.org.

PS – If you do contact your Congressmen/women, please let us know.

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One Small Step for Humanity. . .

Hello… check, check, is this thing working? 

True, a rather silly way to begin a blog, but we are (at least I am) willing to be a little silly in order to reach out to people we’ve never really connected with before.

“Connecting” is what we do. Connecting parents with parents, children with doctors, and relatives and friends with each other. All in the spirit of improving the lives of children with CdLS (that’s Cornelia de Lange Syndrome to those of you who may be wondering why I would be writing about certified driver’s licences).

My name is Darrell Cookman and I am the Director of Individual Giving for the CdLS Foundation. Marie Malloy (the Foundation’s Director of Public Affairs) and I are writing this blog to create a different, fun (we hope) and informational connection between the CdLS Foundation, what we do to serve people and the people we serve.

Amidst captivating information about advocacy and research efforts, we will shamelessly promote Foundation-sponsored events and family appearances in the media while relentlessly encouraging you to link to various areas of our website.

Why? Connection. Involvement. We can serve you better the more we know what you need and want.

What speaks to you about what we do?

What do you believe we should be doing more often or instead?

Not sure what it is we do? That’s exactly why we’re blogging! Keep reading, we will try to fill in the blanks. If you have questions, let us have them. Suggestions? We definitely want those.

Register with WordPress (for directions, click How to Register up top) to respond to what you read here. Comment early and often. We look forward to hearing from you.

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