Cornelia de Lange Syndrome Foundation, Inc.
302 West Main St. #100
Avon, CT USA 06001
Phone: 860-676-8166
Phone: 800-223-8355
Fax: 860-676-8337
email: info@cdlsusa.org
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Press Room: 2006 Archive
Welcome to the CdLS Foundation Press Room. Here you can view CdLS Foundation press releases and CdLS-related news coverage. For specific information about CdLS and the Foundation, please go to About Us.
 News Releases
- CdLS Foundation Adds Staff (11/22/06)
Deirdre Summa, MSW, of West Suffield, CT, has joined the staff of the Cornelia de Lange Syndrome (CdLS) Foundation as a family service coordinator....
- CdLS Executive Director Selected as Nonprofit Congress Delegate (10/4/06)
Julie A. Mairano, executive director of the Cornelia de Lange Syndrome (CdLS) Foundation, will be a Connecticut delegate....
- Annual PA Golf Tournament Benefits Children With CdLS (9/19/06)
The 6th Annual "The Lizzy" Charity Golf Open to benefit the Cornelia de Lange (CdLS) Syndrome Foundation takes place....
- Missouri Company's Golf Tournament Marks 18 Years of Helping People With Genetic Syndrome (9/13/06)
The 18th Annual Cornelia de Lange Syndrome (CdLS) Foundation Golf Tournament takes place....
- TeamCdLS Heads to Chicago (9/12/06)
Team CdLS is off and running on October 22....
- Community Invited To Sing For A Good Cause (9/8/06)
A karaoke dinner dance party takes place Saturday, September 23....
- Mini Golf Tournament Raises Money for Children With CdLS (8/24/06)
The Second Annual Putt Putt Tournament to Benefit Children with Cornelia de Lange Syndrome (CdLS) takes place....
- Genetic and Prenatal Testing for CdLS Now Available Through the University of Chicago (7/17/06)
Genetic and prenatal testing for Cornelia de Lange Syndrome (CdLS) is now available through the University of Chicago.....
For more information, download the University of Chicago CdLS testing fact sheet.
- Three Receive Awards at National CdLS Conference (6/30/06)
Three dedicated women were honored during the CdLS Foundation's 18th National Conference....
- Texas School Ad Campaign Stars Man With CdLS (6/26/06)
Stephen Gersuk of Plano, TX, is the featured face of Denton State School's new advertising campaign....
- CdLS Foundation Receives Grant from Commodity Traders (6/8/06)
The Cornelia de Lange Syndrome (CdLS) Foundation has received a $12,800 grant....
- Documentary Features Young Man With CdLS (6/8/06)
New Yorker Mark Puddington--a young man with Cornelia de Lange Syndrome (CdLS), is the subject of the documentary Mayor of the West Side....
- Cornelia de Lange Syndrome Conference Comes to Philly Area (6/5/06)
The Cornelia de Lange Syndrome (CdLS) Foundation hosts its national conference June 22-25....
- NIH Funds Study on Cornelia de Lange Syndrome Gene (5/27/06)
The National Institute of Health and Human Development (NICHHD)of the National Institutes of Health...
- Massachusetts Golf Tournament Benefits Children With Little-Known Disorder (5/8/06)
The 14th Annual New England Golf Tournament to benefit Cornelia de Lange Syndrome.....
- "Race For Grace" Benefits CdLS Foundation and Seattle Family (4/28/06)
The Seattle Indoor Raceway hosts the "Race For Grace" May 6th....
- Cornelia de Lange Syndrome Awareness Day is May 13 (4/25/06)
Right now, an estimated 20,000 children in the United States live with a genetic disorder....
- Texas Golf Tournament Benefits Cornelia de Lange Syndrome (4/7/06)
More than 120 golfers take to the greens of Bridlewood Golf Club May 4....
- Nebraska Family Travels To State Capital for Proclamation Signing (4/6/06)
Rachelle and Shawn Riedmiller of Columbus, NE, will travel to the State Capital....
- Cornelia de Lange Syndrome Foundation Teams with NIH for DNA Day Event (4/4/06)
Natalie Scacco, MSW, from the Cornelia de Lange Syndrome Foundation is a featured speaker....
- Cornelia de Lange Syndrome Foundation Receives $30k Gift (3/20/06)
The Cornelia de Lange (CdLS) Syndrome Foundation has received $30,000 from its participation in the CIBC World Markets Miracle Day....
- Charlie's Angels Run For Balwin Boy (3/15/06)
More than 20 people will participate in the Spirit of St. Louis Marathon April 9 to raise money for Charlie Keithley of Ballwin....
- CdLS Leadership Takes Message to Nation's Capital (3/3/06)
CdLS Foundation Executive Director Julie Mairano and the Foundation's Board of Directors met with their US Congressmen/women....
- Cornelia de Lange Syndrome Foundation Names Director of Public Affairs (2/17/06)
Marie Concklin Malloy has been named Director of Public Affairs for the Avon-based....
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CdLS in the News
- This boy is not your average kid (12/10/6)
North Platte Telegraph, 2006.
Colt Highberger isn't your average 4th grader....
- "The Lizzy" Benefits Victims of Rare Disease (9/28/06)
Pittsburgh Tribune-Review, 2006.
Sitting in her hospital bed at Children's Hospital in Oakland....
- Running for his Life (9/26/06)
The Times-Union, 2006.
He loves Elmo and toys that make noise or light up....
- Local Man Raises Awareness of CdLS Through Running (9/22/06)
The Independent, 2006.
Heart problems or strokes claimed the lives of each of his grandparents....
- Marathon Run Backs Son's Rare Disorder (9/1/06)
Schenectady Daily Gazette, 2006.
William Smisloff is a loving child with a rare genetic disorder....
- Rare Syndrome Brings Families Together For Information, Support (6/29/06)
Burlington County Times, 2006.
When Laura Mycock was born, the prognosis wasn't good....
- Gene Discovery Helps Understanding (6/29/06)
Burlington County Times, 2006.
Two years ago, Dr. Ian Krantz, a pediatrician with an interest in genetic syndromes...
- Special Children are Highlight of Conference Trips (6/29/06)
Burlington County Times, 2006.
It's not often that I get to write articles that hold a personal interest....
- Genetic Disorder Targeted (6/19/06)
Hartford Courant, 2006.
Adrienne Newton often sings her favorite Hilary Duff song "Wake Up" using a microphone in her room.....
- Rare Condition Often Misdiagnosed. 6/1/06)
WCVB-TV Boston, 2006.
Most people are familiar with Down syndrome and autism, but a rare genetic disorder that has features of both conditions is often misunderstood and undiagnosed...
- At 16, He's More Like a Preschooler (5/30/06)
The News Journal, 2006.
When he emerged from the womb, Josh was everything mother Michelle Ackles had hoped he would be....
- Avon-Based Foundation Marks 25th Anniversary (5/18/06)
Avon Post, 2006.
The foundation had humble beginnings. It was founded in the kitchen of a construction company....
- Suttman Baby Shedding Light (5/16/06)
Herald-Tribune, 2006
The face of Mike and Ann Suttman's baby girl, Sarah, is being seen by a lot of people....
- Windber Teen Overcomes Disease (5/12/06)
Daily American, 2006.
Perhaps part of their email address says it all, TeamTurman.....
- Family Copes With Daughter’s Rare Disorder (5/12/06)
Maryland Independent, 2006.
It took Mark and Shirley Vojtecky a few years to find out what was afflicting their second-born child.....
- The Lesson of the Crocus (5/06)
The Exceptional Parent, May 2006.
Two weeks after Christmas, I received a priceless gift....
- What It's Like To Have a Sibling With a Disability (4/28/06)
Lincoln Journal-Star, 2006.
When asked about life with their siblings, those with a brother or sister with a disability are usually more than willing to talk....
- Local Girl In Korean Film Promoting Handicap Awareness (4/22/06)
Turlock Journal, 2006.
When Karen and Larry Prada went out shopping Tuesday with their daughter....
- City boy has rare malady (4/18/06)
The Columbus Telegram, 2006.
Despite being almost a year apart in age, Joey and his little sister Emma often get mistaken for twins....
- Inn Hosts Family Gathering for Congenital Syndrome (4/7/06)
The Stowe Reporter, 2006.
The families that gather Saturday at the Hob Knob Inn for discussions and camaraderie have one thing in common....
- Runners Get Even More Than They Give (3/31/06)
The St. Louis Dispatch.
The Spirit of St. Louis Marathon does so much good on so many levels....
- Waldorf man goes to D.C. to raise awareness of rare disorder (3/22/06)
Maryland Independent, 2006.
Mark Vojtecky of Waldorf recently met with Maryland legislators in Washington, D.C., to raise awareness of a little-known genetic disorder....
- New Riverton Resident Joins National CdLS Foundation Headquarters in Avon (2/06)
It's been a season of new opportunities for Marie Concklin Malloy....
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