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Recent News in 2014

Press Room Home > 2014 Archives
News Releases

Runner Tackles Chicago Marathon for Daughter with Rare Genetic Disorder

10/09/14
Cape Neddick, ME - (October 8, 2014) Peter Wagner, of Cape Neddick, ME, will join thousands of runners as he toes the starting line at the Bank of America Chicago Marathon October 12. Wagner, and 11 other Team CdLS runners are hitting the pavement for a cause close to their hearts, the Cornelia de Lange Syndrome (CdLS) Foundation.
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Locals Run Saratoga Palio for Rare Genetic Disorder, Family Members

09/15/14
Local families will join together as part of Team CdLS at the Saratoga Palio 5K and Half Marathon on September 21. These 36 runners are hitting the pavement for a cause close to their hearts, the Cornelia de Lange Syndrome (CdLS) Foundation.
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26th Annual Charity Golf Tourney to Benefit Individuals with Rare Disorder

09/08/14
The Cornelia de Lange Syndrome (CdLS) Foundation, a national nonprofit family support organization, is hosting its 26th annual CdLS Charity Golf Tournament at Pevely Farms Golf Club in St. Louis, MO, on September 15.
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Softball Tournament Raises Awareness, Funds for Genetic Disorder

09/08/14
The 4th Annual Arzillo Industries Softball Tournament takes place September 27 & 28 at Northside Park in Norfolk, VA. The event is hosted by the Arzillo family of Norfolk, VA, parents of Steven, 20, who was born with CdLS, a rare genetic disorder that causes a variety of physical, cognitive and developmental disabilities.
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5th Annual Brew & BBQ to Benefit Individuals with Rare Disorder

09/03/14
The Cornelia de Lange Syndrome (CdLS) Foundation, a national nonprofit family support organization, is hosting its 5th annual Brew & BBQ for CdLS at Jeckyll Brewing in Alpharetta, GA, on September 27.
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Two Brothers. One Love of the Game.

03/07/14
Joshua and Jack are brothers. Both love baseball, but one has a rare genetic disorder called Cornelia de Lange Syndrome (CdLS), which could keep him from playing. Thanks to the Santa Anita Little League Challenger Division, now they both can.
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CdLS in the News

Make-A-Wish recipient gets chance to spend more time with family

12/11/14 , http://thenewsherald.com/articles/2010/12/12/news/doc4d02998aa54d7307677860.txt
Sometimes wishes do come true. 

Destiny Caruso, a 7-year-old, living with a debilitating brain condition, made a wish to spend more time with friends and family. Now, thanks to Macy's and the Make-A-Wish Foundation, she can.
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Event hosted for Texas families connected by rare genetic disorder

11/08/14 , McKinney Courier-Gazette
More than 120 people from around Texas gathered together Oct. 25 for one reason: Cornelia de Lange Syndrome (CdLS).
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Maddy's Run in Salt Lake City honors kids with CdLS and special needs

10/05/14 , The Salt Lake Tribune
Runners and walkers honored the memory and life of Maddy Jackson on Saturday in Liberty Park at the 4th Annual Maddy's Run, which raised money for the Cornelia de Lange Syndrome (CdLS) Foundation and the Disability Law Center.
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Maddy's Run in Salt Lake City honors kids with CdLS and special needs

10/05/14 , Salt Lake City Daily Digest
Runners and walkers honored the memory and life of Maddy Jackson on Saturday in Liberty Park at the 4th Annual Maddy's Run, which raised money for the Cornelia de Lange Syndrome (CdLS) Foundation and the Disability Law Center
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5th annual Brew & BBQ benefit

09/10/14 , http://www.northfulton.com/Articles-COMMUNITY-NEWS-c-2014-09-10-205209.114126-sub-5th-annual-Brew-and-BBQ-benefit.html
ALPHARETTA, Ga. - The Cornelia de Lange Syndrome (CdLS) Foundation, a national nonprofit family support organization, is hosting its fifth annual Brew & BBQ for CdLS Saturday, Sept. 27, at Jekyll Brewing in Alpharetta.
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Those with rare disease can find support in Costa Mesa

06/20/14 , http://www.ocregister.com/articles/weber-624405-foundation-jacob.html
Traci Weber has never met anyone who suffers from the same rare genetic disorder as her 4-year-old son, who still fits into baby clothes and can't speak.
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Father fights for campus to thrive

06/14/14 , http://www.dentonrc.com/local-news/local-news-headlines/20140614-father-fights-for-campus-to-thrive.ece
Stephen Joseph Gersuk struggled to keep a mammoth bag of puzzles out of the puddles as he walked from his apartment toward the pharmacy with his father, Stephen Gersuk.
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Community to host fundraiser for Siouxland girl with rare genetic disorder

05/11/14 , http://www.ktiv.com/story/25487531/2014/05/11/community-to-host-fundraiser-for-siouxland-girl-with-rare-genetic-disorder
3-year-old Ella Watkins, her three brothers, and their two loving parents have a beautiful and happy life, but they have had their share of challenges.

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Hose focuses on CdLS awareness

05/10/14 , http://www.journalreview.com/news/article_42222ca0-d7d0-11e3-be54-001a4bcf887a.html
Everyone at Hose Elementary School who knows seven-year-old Addison Brown simply loves her. The personable kindergarten student, who was born with a rare disorder called Cornelia de Lange Syndrome, has inspired many who have gotten to know her. On Friday, the school took a moment to become more aware of those who are different.
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Montana girl has rare genetic disease

05/02/14 , http://www.kaj18.com/news/montana-girl-has-rare-genetic-disease/
BILLINGS - Missing arms or fingers, uni-brows and small stature are all symptoms associated with Cornelia De Lange Syndrome.
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Outdoors Notebook: Free Kids Derby at Indian Lake Estates

04/24/14 , http://www.theledger.com/article/20140417/OUTDOORS/140419370/1016/SPORTS?template=printpicart
The Indian Lake Estates Yacht Club's annual Kids Fishing Derby is Saturday, May 10, at the Indian Lake Estates lake-front pavilion on Lake Walk-in-the-Water.
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Former Fashion Photographer Aims to Create 'New Standard of Beauty' Beyond Physical Differences

04/16/14 , http://wuwm.com/post/former-fashion-photographer-aims-create-new-standard-beauty-beyond-physical-differences
Photographer Rick Guidotti has spent his career capturing beauty on film.
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Custom Rifle in Raffle for Reagan

03/19/14 , http://www.theledger.com/article/20140313/COLUMNISTS0603/140319611?template=printpicart
Reagan Tala was born in Lakeland with a rare genetic disorder that requires around-the-clock care and frequent trips to the Winnie Palmer Hospital for Women & Babies in Orlando.
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Great Day - KCWI 23 - Rare Disease Day Coverage

02/28/14 , http://www.youtube.com/watch?v=j2mmP7bAJbI
Rare Disease Day - Published on Feb 28, 2014 - Every Day is a Great Day to watch KCWI23-HD!

Parent of disabled child sues N. Allegheny district over transportation dispute

02/18/14 , http://triblive.com/news/adminpage/5620367-74/district-lawsuit-care?printerfriendly=true#axzz2v0BS6Gf7
The parent of a 7-year-old boy with severe disabilities claims in federal lawsuit filed Tuesday that North Allegheny School District is violating federal law by refusing to transport him between a private day care center and school that are outside the district's boundaries.
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Mar-Mac Friends Helping Friends: Helping because they can

02/11/14 , http://www.claytoncountyregister.com/articles/2014/02/11/mar-mac-friends-helping-friends-helping-because-they-can
The Mar-Mac Friends Helping Friends will hold their annual Winter Triathlon and Benefit Feb. 14-15, marking the 10th year of the event, as well as the year the group finally got an official name.
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Robert Boneberg of Maplewood takes on role of president of nonprofit

02/03/14 , http://www.nj.com/independentpress/index.ssf/2014/02/robert_boneberg_of_maplewood_t.html
Attorney Robert Boneberg of Maplewood will take on the role of president of the Board of Directors of the Cornelia de Lange Syndrome (CdLS) Foundation in 2014. Boneberg and his wife, Karen Aschenbrenner, were introduced to the Foundation when their son, Alex, 26, was diagnosed with CdLS.
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