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Recent News in 2016

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News Releases

Cornelia de Lange Syndrome Foundation Raises Over $6,000 on Giving Tuesday

12/23/16
The Cornelia de Lange Syndrome Foundation (CdLS) raised over $6,000 in less than 24 hours on Giving Tuesday in November. The global day of giving harnesses the collective power of individuals, communities and organizations to encourage philanthropy and to celebrate generosity worldwide. Giving Tuesday is held annually on the Tuesday after Thanksgiving and the widely recognized shopping events Black Friday and Cyber Monday to help kick-off the holiday giving season. 
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Cornelia de Lange Syndrome Foundation Joins the Global Giving Tuesday Movement

11/22/16
The Cornelia de Lange Syndrome Foundation (CdLS) has joined Giving Tuesday, a global day of giving that harnesses the collective power of individuals, communities and organizations to encourage philanthropy and to celebrate generosity worldwide. Occurring this year on November 29, Giving Tuesday is held annually on the Tuesday after Thanksgiving and the widely recognized shopping events Black Friday and Cyber Monday to kick-off the holiday giving season.
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Parents Host "One Love, One Heart 5K" to Benefit Rare Disorder, Daughter

11/02/16
Jim and Jen Pomfret are preparing to mark the twelfth year of what is called the hottest 5K of December. As the One Love, One Heart 5k slogan reads, "One love refers to the universal love and respect expressed by all people for all people." At the event, this love is directed towards those who have a rare genetic disorder called Cornelia de Lange Syndrome (CdLS). This includes their daughter, Maya.
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28th Annual Charity Golf Tourney Benefits Individuals with Rare Disorder

10/21/16
The Cornelia de Lange Syndrome (CdLS) Foundation, a national nonprofit family support organization, held its 28th annual CdLS Charity Golf Tournament at the Tapawingo National Golf Club in St. Louis, MO, on October 10.
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Foundation for Rare Genetic Disorder Funds Three Research Projects

09/01/16
Avon, CT - (September 1, 2016) As part of its 2016 Small Grants Program, the Cornelia de Lange Syndrome (CdLS) Foundation awarded $45,000 to researchers studying various aspects of the genetic disorder. 
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National Nonprofit Teams Up With PGA Tournament Charity Program

07/11/16
AVON, CT (July 25, 2016) -- The Cornelia de Lange Syndrome (CdLS) Foundation of Avon, CT, is proud to partner with the Travelers Championship for the first time to participate in their Birdies for Charity fundraising program. 
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CdLS Foundation earns coveted 4-star rating from Charity Navigator

06/25/16

The Cornelia de Lange Syndrome (CdLS) Foundation earned a 4-star rating for sound fiscal management practices and commitment to accountability and transparency from Charity Navigator, America's largest independent charity evaluator. This is the fifth consecutive time that the CdLS Foundation has earned this top distinction.

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CdLS in the News

Daughter never discussed aborting son with birth defect

12/22/16
When my daughter was pregnant with him, a sonogram indicated many abnormalities such as no arms, enlarged heart, spinal problems and on and on. She and her husband never even discussed abortion, and Adrian was actually taken by forced labor due to the threat on his life in the womb.
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New southern playground for children with disabilities

12/19/16
A $960,000 playground in Park Holme -- Adelaide's first designed for children with
disabilities -- may have to be scaled back amid a cloud over a large chunk of its
funding.
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HudsonAlpha acts as catalyst for Alabama bioscience growth

11/22/16
David and Miranda Ainsworth of Florence spent eight years going to countless doctor appointments searching for a diagnosis for their daughter Anna Brooke.
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NORD News for November The Voice of the Community

11/16/16
CDLS Foundation announces research grants.
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Bournemouth charity helps man with disabilities secure job

10/18/16
A Bournemouth charity has helped another young person with disabilities secure a job.
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Figuring out Anna Brooke with new genetic testing in Alabama

10/06/16
"We just knew in our hearts there was something else going on," Miranda Ainsworth of Florence said Wednesday.
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Daughter inspires York dad to run Chicago Marathon

09/21/16
Young adults who grew up in York as well as their parents will remember
Molly Wagner. Now 28, Wagner is a profoundly disabled young woman who suffers
from Cornelia de Lange Syndrome, a congenital syndrome that causes physical, cognitive
and development issues.
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Honey for charity: Roland Park beekeepers harvest 1,200 jars from local hives

08/23/16 , http://www.baltimoresun.com/news/maryland/baltimore-city/bs-md-city-honey-harvest-20160821-story.html
The stickiest, most labor-intensive part of harvesting honey is also the most satisfying to watch.
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Paradise girl not letting her condition slow her down

08/16/16 , http://www.actionnewsnow.com/news/paradise-girl-not-letting-her-condition-slow-her-down/
Cornelia de Lange Syndrome is a fairly rare genetic disorder that can cause physical, cognitive and medical challenges, but one Paradise girl isn't letting her condition slow her down.
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Torrington residents recognized for work with foundation centered around genetic disorder

07/18/16 , http://www.registercitizen.com/article/RC/20160715/NEWS/160719734
A Torrington couple has been recognized for their longtime work with the Cornelia de Lange Syndrome Foundation, and were recently inducted as members of the de Lange society. The organization issued a statement regarding the honor earlier this week.
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Special Olympics skater awaits World Winter Games

07/08/16
Four-year cycles are nothing new to figure skater Darlene Jakubowski. As a Special Olympics athlete, she's built her sporting career around a four year competitive ladder, each year climbing from regional, provincial and national championships to the ultimate achievement, the Special Olympics World Winter Games.
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Going all in for Addison

05/16/16 , http://www.journalreview.com/news/article_c5cd6a44-18a4-11e6-8732-bf443425e44a.html
There will be a lot of purple inside Nicholson Elementary today. The proof is in the amount of purple that filled the halls of Hose Elementary today.
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Trail of compliments leads to special promposal

03/18/16
Growing up with a twin brother who has a disability, Diana McMillion, 17, learned firsthand how
important shared experiences are.
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Video shows Brockport student's sweet prom proposal

03/16/16
18yearold Ketchel Clements of Brockport has Cornelia de Lange Syndrome or CdLS-- a
disorder that causes physical and mental disabilities similar to Down Syndrome. The trail of footprints started outside of his classroom and eventually led him to Diana. Where, in front of his mom and classmates, Diana popped the big question.
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Eli's Story: Living With CdLS

03/03/16 , http://www.wdtv.com/wdtv.cfm?func=view§ion=5-News&item=Elis-Story-Living-With-CdLS-29121
Eli is a happy, 4-year-old boy from Terra Alta. He loves playing with his toys and is constantly bouncing around the house. But, Eli also lives with a rare condition called Cornelia De Lange Syndrome, or CdLS.
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Inclusion Center to host educational events

02/04/16 , http://www.commonsnews.org/site/site05/story.php?articleno=13974&page=1#.VrNoh1Ji-Co
Miss VT International 2016, Maddie Shaw, will have her first public speaking event at The Inclusion Center, on Monday, Feb. 8, at 12:30 p.m. at the First Baptist Church on Main Street.
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Curry night set to help little Reuben, 2, fight rare condition

01/27/16
PREPARATIONS are spicing up for a fundraising curry night in Puddletown to support a two-year-old local boy with a rare condition.
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Family Of Suburban Girl Makes Social-Media Appeal To Recover Prized Possession

01/22/16 , http://chicago.cbslocal.com/2016/01/21/family-of-suburban-girl-makes-social-media-appeal-to-recover-prized-possession/
Many of us have a sentimental possession that means everything: an heirloom watch, a photograph, a ring.
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Miss Vermont International 2016: More to Reformer reporter Maddi Shaw than meets the eye

01/06/16 , http://www.reformer.com/ci_29352469/more-reformer-reporter-than-meets-eye
Growing up with a special-needs sibling has shaped Maddi Shaw's life.

Her brother Miles Shaw, now 27, has Cornelia deLange Syndrome, or CdLS, a condition present at birth that causes "a range of physical, cognitive, and medical challenges," according to the CdLS Foundation website.
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