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Recent News in 2015

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News Releases

Locals Run Saratoga Palio for Rare Genetic Disorder, Family Members

09/15/15
Saratoga Springs, NY - (September 15, 2015) Local families will join together as part of Team CdLS at the Saratoga Palio 5K and Half Marathon on September 20. These 12 runners are hitting the pavement for a cause close to their hearts, the Cornelia de Lange Syndrome (CdLS) Foundation. 

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Eating Pizza, Raising Funds for Rare Genetic Disorder

07/28/15
HAMPTON, NH - (July 27, 2015) On August 10, the Community Oven Pizzeria will host a fundraising night for the Cornelia de Lange Syndrome (CdLS) Foundation, from 5-9:00 p.m. Though you may have not heard of CdLS, a rare genetic disorder, event host, Brenda Shepard, bets that it's closer to your community than you think. 
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Local Father Gets "DOWN AND DIRTY" for Son with Rare Genetic Disorder

07/14/15

PHILADELPHIA, PA--(July 8, 2015) On July 26, Mike Feehan of Chester Springs, PA, will be partaking in his sixth run for Team CdLS, the Merrell Down and Dirty 5K, in honor of his son Connor, 7, who has Cornelia de Lange Syndrome (CdLS). 

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CdLS FOUNDATION EARNS COVETED 4-STAR RATING FROM CHARITY NAVIGATOR

04/02/15
The Cornelia de Lange Syndrome (CdLS) Foundation's sound fiscal management practices and commitment to accountability and transparency have earned it a 4-star rating from Charity Navigator, America's largest independent charity evaluator. This is the fourth consecutive time that CdLS Foundation has earned this top distinction.
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CdLS in the News

Focus Atlanta

11/29/15 , http://cwatlanta.cbslocal.com/2015/11/30/focus-atlanta-112915/
Decatur hosts the One Love One Heart 5K to benefit CdLS.
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Annual "One Love, One Heart" 5K Run/Walk On December 5th to Benefit Individuals with Rare Disorder

11/20/15 , http://www.decaturmetro.com/tag/one-heart-5k-runwalk-for-cdls/
All are welcome at the annual One Love, One Heart 5K Run/Walk for CdLS at Medlock Park in Decatur, GA, on December 5th, for a morning of family fun and community support.
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Middletown native, Cubs catcher Kyle Schwarber remembers his roots

11/14/15 , http://www.journal-news.com/news/news/middletown-native-cubs-catcher-kyle-schwarber-reme/npMrt/
BUTLER COUNTY -- Kyle Schwarber has as much power away from baseball as he does in the batter's box.
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Youth football team honors disabled teammate

11/03/15 , http://www.khou.com/story/news/features/2015/11/03/youth-football-team-honors-disabled-teammate/75113818/
SPLENDORA - A youth football team honored one of its players in a big way.
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Sheepshead Bay's Dena Borgia Running In NYC Marathon For Her Son, Diagnosed With CdLS

10/22/15 , http://www.sheepsheadbites.com/2015/10/sheepshead-bays-dena-borgia-running-in-nyc-marathon-for-her-son-diagnosed-with-cdls/
In less than two weeks, Sheepshead Bay resident Dena Borgia will join more than 50,000 runners for the New York City Marathon. Every participant has their own reason for joining the race. For some, it's about the thrill of competition -- an opportunity to measure themselves against the world's best long distance runners. Others, like Dena, will be crossing the finish line to raise money for charity. However, Dena's fundraising effort hits very close to home. Her run will raise money for the Cornelia de Lange Syndrome (CdLS) Foundation, an organization that supports those diagnosed with CdLS as well as their families.
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Hotels, community groups offer special Halloween

10/22/15 , http://www.postcrescent.com/story/entertainment/events/halloween/2015/10/22/great-country-pumpkin-party/74438404/
GRAND CHUTE -- A variety of community groups made Halloween come early for some Fox Valley kids who might not otherwise have the chance to get their share of tricks and treats.
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Zebrafish Study Shows New Insights On Human Heart Defects

10/19/15 , http://www.scienceworldreport.com/articles/31434/20151016/zebrafish-study-shows-new-insights-human-heart-defects.htm
Researchers now have new insights about the causes of congenital heart defects, a rare developmental disorder, by experimenting with zebra fish, according to a news release.
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Bayside woman running Chicago Marathon to raise awareness of genetic disorder

10/06/15 , http://www.glendalenow.com/news/bayside-woman-running-chicago-marathon-to-raise-awareness-of-genetic-disorder-b99590717z1-330742551.html
Running a marathon isn't something you do on a whim.
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Company Steps In To Help After Disabled Child's Wheelchair Stolen In Elizabeth

09/16/15 , http://newyork.cbslocal.com/2015/09/16/elizabeth-disabled-child-wheelchair-stolen/
ELIZABETH, N.J. (CBSNewYork) -- There is outrage in a New Jersey neighborhood after someone stole a child's wheelchair.
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Finding compassionate friends amid grief

08/28/15 , http://journaltimes.com/lifestyles/faith-and-values/finding-compassionate-friends-amid-grief/article_bf5c64ad-1610-514b-93d9-35e3b024f90b.html
After her daughter was killed 25 years ago this summer, it was a struggle to get out of bed each morning.
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Mom's beautiful tribute to daughter turns kids' disabilities into 'super powers'

08/04/15 , www.today.com/parents/moms-beautiful-tribute-daughter-turns-kids-disabilities-super-powers-t35601
Rachel Callander's daughter was born with a rare chromosomal condition that doctors said left her "incompatible with life." She would have dysmorphic features, grow up developmentally delayed and would never walk or talk.
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Fundraiser established to help toddler attend CdLS conference

08/04/15 , www.westsenecasun.com/fundraiser-established-to-help-toddler-attend-cdls-conference/
Her name is Aubrey Garigen. She's only 2-years-old, but she's stealing hearts all around Western New York.

"She really is an inspiring kid, I must have to say," said Nicole Garigen, Aubrey's mom.
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Eat pizza, raise funds for rare genetic disorder

08/04/15 , http://www.seacoastonline.com/article/20150803/NEWS/150809800
HAMPTON - The Community Oven Pizzeria will host a fundraising night from 5 to 9 p.m. on Aug. 10 for the Cornelia de Lange Syndrome (CdLS) Foundation. Though you may have not heard of CdLS, a rare genetic disorder, event host, Brenda Shepard, bets that it's closer to your community than you think.
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Local man participates in mud run to honor daughter

07/21/15 , http://www.app.com/story/life/wellness/2015/07/21/mud-run/30425273/
On July 11, Shawn Carr participated in the Rugged Maniac 5K obstacle course at Raceway Park in Englishtown in honor of his daughter. Along with his wife, brother and college friend, Carr fundraised for the Cornelia de Lange Syndrome Foundation while training for the race.
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New Genetic Syndrome Found, Arising from Errors in 'Master Switch' During Early Developmen

07/02/15 , prnewswire.com
PHILADELPHIA, March 2, 2015 /PRNewswire-USNewswire/ -- Analyzing a puzzling multisystem disorder in three children, genetic experts have identified a new syndrome, shedding light on key biological processes during human development. The research also provides important information to help caregivers manage the disorder, and may offer clues to eventually treating it.
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Siblings spread message of love and acceptance

06/05/15 , http://www.thetelegram.com/News/Local/2015-06-18/article-4187273/Siblings-spread-message-of-love-and-acceptance/1
Melanie Glatzmayer, three years older than her brother, was born with Cornelia de Lange Syndrome -- a rare developmental disorder with only 100 known cases in Canada.
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10 Things I Discovered Because of My Brother With Special Needs

05/27/15 , http://themighty.com/2015/05/10-things-i-discovered-about-life-because-of-my-brother-with-special-needs1/
My middle brother, Gabe, is almost 27. He has a syndrome called Cornelia deLange Syndrome (CdLS). He can't use the bathroom on his own and does not really speak. Growing up with a special needs sibling taught me a lot of lessons and helped shape me into the person I am today.
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Open hearts, open doors

05/26/15 , http://kdhnews.com/texappeal/features/open-hearts-open-doors/article_56d260ac-03c6-11e5-a1e5-efa0df563c36.html
Philanthropic women share a common goal: Helping those in need
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Online beauty products site tugs at customers' hearts

05/11/15 , http://www.dallasnews.com/business/columnists/cheryl-hall/20150509-hall-online-beauty-products-site-tugs-at-customers-hearts.ece
This is the day when mothers are lavished with untold millions in expensive fragrances, makeup and body care luxuries. What if 5 percent of the purchase price of every gift were donated to the mom's favorite charity?

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Local company rallies for awareness of rare genetic disorder

05/07/15 , http://www.yourhoustonnews.com/deer_park/living/local-company-rallies-for-awareness-of-rare-genetic-disorder/article_316f8424-073f-5b3e-af84-56916d75a524.html
Luanna "Lu" Fielder, and her husband, Bill, are the owners of Fielder Electric Supply Company out of Houston. They also have a daughter, Jaclyn, 23, who has a rare genetic disorder, called Cornelia de Lange Syndrome (CdLS). In honor of National CdLS Awareness Day, employees of Fielder Electric Supply Company will be hosting a special day on Friday, May 15.
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Valley Community Raising Awareness for Girl with Rare Disorder

05/07/15 , http://www.chewelahindependent.com/news/local-news/2292-valley-community-raising-awareness-for-girl-with-rare-disorder
In honor of National Cornelia de Lange Syndrome (CdLS) Awareness Day, and also a special little girl named Chloe, community members, family and friends will come together at Valley Park in Valley on May 8 at 3 p.m. to understand differences and learn about acceptance.
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Iowa School for the Deaf families share reasons for placing students

05/07/15 , http://www.omaha.com/news/goodnews/iowa-school-for-the-deaf-families-share-reasons-for-placing/article_6ba36bc8-f4c8-11e4-8f0f-3b132685a2c9.html
COUNCIL BLUFFS - A few weeks after Izabelle Schon was born, doctors diagnosed her with Cornelia de Lange Syndrome, a genetic disorder that slows her development. She was also diagnosed as deaf.
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ISD families share reasons for placing students

05/07/15 , http://www.nonpareilonline.com/news/local/isd-families-share-reasons-for-placing-students/article_636d673a-46a0-5f03-9ee4-02aed2480b3d.html?mode=print
A few weeks after Izabelle Schon was born, doctors diagnosed her with Cornelia de Lange Syndrome, a genetic disorder that slows her development. She was also diagnosed as deaf.
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C'ville schools raising awareness for rare disorder

05/04/15 , http://www.thepaper24-7.com/Content/News/Local-News/Article/C-ville-schools-raising-awareness-for-rare-disorder/23/22/51533
In honor of National Cornelia de Lange Syndrome (CdLS) Awareness Day, and also a special little girl named Addison, two schools are celebrating in Crawfordsville, on May 8, each in their own special way.
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Schools raise awareness for student with rare disorder

05/04/15 , http://www.journalreview.com/news/article_db7ec73e-f073-11e4-8748-bb4855207748.html
In honor of National Cornelia de Lange Syndrome (CdLS) Awareness Day, and also a special little girl named Addison, two Crawfordsville schools are celebrating Friday, each in their own special way.
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2nd Annual "Ella's Run" to Support Hubbard Family Set for May 9th

04/29/15 , http://www.siouxlandmatters.com/story/d/story/2nd-annual-ellas-run-to-support-hubbard-family/35262/i4Ec8jGyjkyIJZIQ7t31fQ
Hubbard, NE (ABC9 News) - The community of Hubbard, NE is once again coming together for a local family. The town is holding a 5K on Sunday, May 9th called "Ella's Run." Proceeds will help send 4-year-old Ella Watkins and her family to a national conference in Orlando, Florida.
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Portrait of passion: Kids help OT as much as she helps them

04/16/15 , http://www.buffalobulletin.com/article_a4a046cc-dfc3-11e4-a878-6beba28feb10.html
A polar bear is skating across a sheet of ice. 

He hears a sound and the ground begins to crack. Now it's up to a young Meadowlark Elementary School student and Marilyn Gibbons to save him by tapping out blocks of ice as he keeps skating.
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Medical Mystery, Solved! Part Two: How One Doctor's Detective Work Helped Three Families

03/26/15 , http://www.people.com/article/chops-syndrome-ian-krantz-childrens-hospital-philadelphia
Leta Moseley is tiny.
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Solving a Medical Mystery: What's Wrong with My Child?

03/26/15 , http://www.people.com/article/medical-mystery-leta-moseley-ian-krantz-CHOP
For the first year of her daughter's life, Lainey Moseley was in denial.
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New genetic syndrome found, arising from errors in 'master switch' during early development

03/02/15 , http://www.sciencedaily.com/releases/2015/03/150302121611.htm
Analyzing a puzzling multisystem disorder in three children, genetic experts have identified a new syndrome, shedding light on key biological processes during human development. The research also provides important information to help caregivers manage the disorder, and may offer clues to eventually treating it.
Read Full Story »

New Genetic Syndrome Found, Arising from Errors in 'Master Switch' During Early Development

03/02/15 , http://www.prnewswire.com/news-releases/new-genetic-syndrome-found-arising-from-errors-in-master-switch-during-early-development-300042992.html
Analyzing a puzzling multisystem disorder in three children, genetic experts have identified a new syndrome, shedding light on key biological processes during human development. The research also provides important information to help caregivers manage the disorder, and may offer clues to eventually treating it.
Read Full Story »

Rare Disease Day Brings Advocates to the State Capitol

02/25/15 , http://www.courant.com/politics/capitol-watch/hc-advocates-for-those-with-rare-diseases-come-to-the-capitol-in-hartford-20150225-story.html
Wednesday was Rare Disease Day at the state Capitol, giving advocates for those afflicted a high-profile forum to shine a spotlight on their concerns.
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Nikki Rauscher made the most of her short life

02/18/15 , http://www.oneidadispatch.com/general-news/20150216/nikki-rauscher-made-the-most-of-her-short-life
Nikki Rauscher was only on this Earth for 18 years, but in that time she touched the lives of people locally and globally.
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McCrabb: Man's first words to Franklin Twp. woman: 'Will you marry me?'

02/15/15 , http://www.journal-news.com/news/news/local/mccrabb-mans-first-words-to-franklin-twp-woman-wil/nj9gJ/
They took "love at first sight" to a different stratosphere.

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Family trip to help boy, 3, with rare condition

01/08/15 , http://www.beloitdailynews.com/news/illinois/family-trip-to-help-boy-with-rare-condition/article_6877c422-9685-11e4-9698-a36dbda1b1d3.html?mode=print
At 3 years old, Benjamin stands 33 inches tall and weighs around 23 pounds. He is learning to walk and is always smiling.
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