Monthly Archives: December 2008

Online Inspiration

Maegan

Maegan

In the midst of all the holiday madness, take a moment to check out something truly inspirational. Maegan, 34, from Greensboro, NC , has CdLS and recently created her own Web page to  raise awareness of the syndrome.

Maegan’s Web page creation was part of her graduation project at Partners in Policymaking, a national program that helps promote advocacy for  individuals with developmental disabilities. Her page includes her personal experience of being diagnosed with CdLS as an adult, along with important information about the sydrome and links to other sites and blogs about CdLS. Who better to inform others about CdLS than someone with the syndrome?!

Maegan’s Web page inspires and encourage others with CdLS to strive for their goals and accomplish things that others without CdLS can.

Click here to check out Maegan’s Web page. Thank you Maegan! -JS

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Filed under CdLS, Links

Share Your Story for Rare Disease Day

Rare Disease Day is February 28, 2009

Rare Disease Day is February 28, 2009

The Foundation is happy to announce its participation in Rare Disease Day, taking place February 28, 2009.  The purpose of Rare Disease Day, sponsored by the National Organization of Rare Diseases (NORD), is to join people all over the country in raising awareness of rare conditions.

A “rare disease” is any medical condition affecting fewer than 200,000 people in the United States. There are more than 6,000 rare disorders affecting some 25 million men, women and children in our country. 

You can be part of Rare Disease Day by sharing your story. NORD is seeking personal stories about living with a rare conditions — or in the case of CdLS, caring for someone with one.  These stories may be shared with the media and/or featured on the NORD Web site. 

So find your inner author and get writing! Please send your stories to Marie at outreach@cdlsusa.org.  We look forward to reading and sharing all of your great, inspiring stories.    – JS

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“One of a Kind” Support

One of the unique necklaces available from Shekinah Designs
Shekinah Designs necklace

Whether you’re searching for a unique holiday gift or the perfect new addition to your jewelry collection, look no further!

Sandra Pasqualone-Cooper, custom jewelry designer and mom of Joy, who has CdLS, has decided to donate 50% of profit sales from her jewelry Web site, Shekinah Designs, in the month of December to benefit the CdLS Foundation. Her necklaces are as beautiful as they are unique and affordable!

To check out the unique collection and make a purchase to support the Foundation, please visit http://www.sandscooper48.etsy.com today.

After December, Sandra will continue to donate 5% of her proceed to the Foundation. Thank you Sandra for your generosity!  – JS

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Filed under CdLS, CdLS Events, Foundation News, Fundraising

Support the CdLS Foundation in Style

For those who haven’t heard the news, the CdLS Foundation’s online store is back in action with a new variety of logo apparel and gifts. From t-shirts, sweatshirts, onesies, and hats to tote bags, teddy bears, mugs, and calendars, our store has everything you need to fashionably sport the CdLS Foundation and/or Team CdLS logos. A portion of all proceeds directly benefit the CdLS Foundation and support our efforts to reach out and help as many families as possible. There’s nothing better than supporting a great cause and looking good while doing so!

Visit http://www.cafepress.com/cdlsshoponline to check out our inventory. You will also find a link to the store on the Foundation’s Web site homepage, www.CdLSusa.org. Happy Shopping! -JS

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Filed under CdLS, Foundation News, Fundraising, Uncategorized