Home | Calendar | Español | Media Room | Shop | Contact Us

Recent CdLS in the News

Press Room Home > CdLS in the News Archives

'Amazing people' work at Opportunity Enterprises

06/04/17
"Hi Jerry, how have you been?" asked Melissa, 39, who was working on counting money with help from a computer and an aide.

Melissa was born with Cornelia de Lange Syndrome, a genetic disorder affecting one in every 10,000 live births hat causes learning disabilities.

Opportunity Enterprises Inc.'s main complex is still a finely-tuned operation where several programs work in sync. There's a production line workshop providing local and regional businesses with piecework goods, and providing O.E. clients with low-end manufacturing jobs.

The sprawling facility continues to house a booming business of shredding papers - up to 20 tons each week - for roughly 1,200 customers across Northwest Indiana.
Read Full Story »

Two women turn disabilities into strengths and employment

05/30/17
Susan Wiseman swings her arms and hips to the music at the door of Chuck E. Cheese's, where she waits for families' hands to inspect and stamp.

"Any kind of song," Susan says, will make her boogie.

So, when the kiddie restaurant recently threw a party for her 20th year of work, its furry mascot pranced out and the two danced as Susan said, "Oh Chuck E., I love you Chuck E."

Susan is 48 and has CdLS.
Read Full Story »

Samantha Manns: Raising Funds While Riding a Bike

05/25/17
Samantha Manns has gone above and beyond for the CdLS Foundation, participating in a 40-mile bicycle ride fundraiser with just three weeks' notice.
Read Full Story »

Two exceptional special needs students among 125 Bay High graduates

05/17/17
Two Bay High graduates likely taught as much as they learned during their years at the school.

Brent Anderson received the Inspirational Tiger Award at senior awards. Clarence Kennedy was honored for having the Heart of a Tiger. Thursday, they'll get their diplomas with 123 other seniors at the Bay High football field.

Brent has been an inspiration to get to know and love during his time here at Bay High," Amy Coyne, Bay High principal, said. "He inspires every one of us to be better people every day."
Read Full Story »

Educating and accepting

05/13/17
National Cornelia de Lange Syndrome (CdLS) Awareness Day is observed the second Saturday of May each year in order to bring attention to this often misdiagnosed genetic syndrome.
Since CdLS is unfamiliar to most people, Awareness Day is an opportunity to educate others about the syndrome. Angie Brown, a 2nd and 3rd grade teacher at Nicholson, used this time to educate local students on CdLS, a syndrome that her daughter, Addison, was diagnosed with in 2007.
Read Full Story »

'When you wish upon a star'

04/24/17
It's not every little girl who gets greeted by Snow White at the Blue Bunny Ice Cream Parlor, but that's what happened for five-year-old Skylar Olson Thursday.

The Make-A-Wish Foundation granted Skylar's wish to visit Disney World in Florida.

Attending were Skylar's parents, Justin and Trista Olson, her sister, Jordyn, 8, and brothers, Jayden, 9 and Wyatt, 3, Make-A-Wish volunteers and local Farm Bureau Financial Services representative Mark Frentress.

Trista explained Skylar has a rare gene disorder, Cornelia de Lange syndrome.
Read Full Story »

Fountain City family hoping for service dog

04/13/17
A Fountain City family is doing all they can to give their little boy some independence, that freedom would be in part because of a service dog.

Christie Rouse's youngest son, Payson, was born with a rare genetic disorder called Cornelia de Lange syndrome (CdLS). The six-year-old was recently approved for his very own service dog. The only problem is that the service dog costs between $13,000 to $15,000.
Read Full Story »

Regulator of chromosome structure crucial to healthy brain function and nerve development

04/13/17
Cohesion controls gene expression and chromatin structure, as well as enabling chromosomes to separate correctly immediately prior to cell division. Mutations in the genes encoding proteins that regulate cohesin and cohesin protein itself cause the developmental disorder Cornelia de Lange syndrome (CdLS). This genetic knowledge hinted that the disease does not result from faulty chromosome separation but rather from structural defects in the chromosome.
Read Full Story »

Going mainstream: Parents share mixed views as Northampton prepares to launch a new special education model next school year

04/11/17

City mom Erica McMahon said classroom "inclusion" looks good on paper, but there are children for whom mainstream education simply won't work. She says her son, who attends R.K. Finn Ryan Road Elementary School, is one of them.

That's not the case for another Ryan Road parent, Suna Turgay, who thinks inclusion will be great for her 10-year-old son. She said her son, who has Cornelia de Lange, a genetic mutation, currently spends much of his day outside the general education classroom receiving speech and physical therapies.

Read Full Story »

Sweet Passover treat offered for special needs Jewish congregants

04/05/17
Some people have seders on the first night of Passover, some have them the second. And some, like those at Congregation Beth Shalom on Sunday, have chocolate seders.

Beth Shalom Cantor Steven Stoehr founded HUGS - Healthy Understanding, Growing Spaces - to give special services to those who wanted or needed them...He said he sought to open the area's worship community to people who had a hard time clearing hurdles, to "get us out of our own silos."

Mikayla Needlman, 11, came to her first HUGS event Sunday, said her father, Marc Needlman. She has Cornelia de Lange Syndrome, which for Mikayla means developmental delays, said her father.
Read Full Story »

HudsonAlpha's 'Childhood Champion' is raising awareness on genetic disorder research

03/29/17
WAAY 31 is partnering with HudsonAlpha Institute for Biotechnology in Huntsville to sponsor the 2017 Double Helix Dash.

Proceeds from the event fund research on genetic disorders.

This year's childhood champion is Anna Brooke Ainsworth. Ainsworth's mom, Miranda, knew Anna Brooke was not developing as quickly as she should and sought out a solution.
Read Full Story »

Searching for a place to call home

03/27/17

Marie Sabine has spent years worrying about where her daughter will live and what kind of help she will get as both of them get older and, eventually, Marie dies.

Her daughter, Tracie Sheppard, now 48, was born with a rare genetic abnormality called Cornelia de Lange syndrome, which resulted in both physical and mental impairments. She will need her own place, one where she gets support, for life.

She is part of a new generation of people with similar issues who can no longer easily be shipped off to institutions, group homes or home shares - the solutions of the past.

Read Full Story »

Geneticist Dr. Laird G. Jackson receives David L. Rimoin Lifetime Achievement Award

03/23/17

Laird G. Jackson, MD, FFACMG, is the recipient of the 2017 ACMG Foundation David L. Rimoin Lifetime Achievement Award.

The 86-year-old Dr. Jackson, a professor of obstetrics, gynecology, and medical genetics at Drexel University College of Medicine, was honored for his commitment to teaching, his leadership in the field of prenatal genetic screening, and his decades of work surrounding the characterization and treatment of Cornelia de Lange Syndrome.

Read Full Story »

Another family who loves foster children

03/20/17
Philip and Shelli Olson have been doing foster care for years. They have adopted six of their foster kids. They have had one little girl from birth who has Cornelia de Lange syndrome and when they found out about her sister, who also has it, they adopted her as well.
Read Full Story »

Winterfest more like spring blast

02/23/17
The Ida Fireman's Park is hoping to raise between $40,000 and 50,000 for the Wertenberger family. Dusty and Jen Wertenberger's one-year-old son, Kaiden, was born with several birth defects, such as heart issues, a small head and a hand defect.

The family, wearing purple T-shirts that stated they love someone with CdLS (Cornelia de Lange Syndrome, a very rare genetic disorder), gathered around Kaiden inside.
Read Full Story »

Challenged 10-year-old thrilled with her Camaro wheelchair

02/11/17
Emma Pietrafesa, a 10‐year‐old girl who has Cornelia de Lange Syndrome, was presented, along with her brother Anthony, 12, and her mother Karen, with a 2010 Camaro wheelchair/stroller on Friday.
Read Full Story »

Boynton Beach employees build 'magic' wheelchair for young girl

02/10/17
for most girls, getting around in a purple Camaro as their first car is only a dream. For Emma Pietrafesa, Who was born with a developmental disorder, it was a reality in the form of a "magic" purple wheelchair, Built especially for her by two Boynton Beach city employees.
Read Full Story »

Wellington girl, 10, who can't walk or speak, getting 'magic' wheelchair

02/08/17
Emma Pietrafesa, a 10-year-old girl who has Cornelia de Lange, has been asked by the city of Boynton Beach to be the honorary starter of the fifth annual Barrier Free 5K Charity Run, Walk & Roll on Feb. 11th.
Read Full Story »

Randolph Southern CdLS Awareness

01/31/17
The Randolph Southern Spirit Store will be hosting a CdLS Awareness Night on Thursday, February 2, 2017 during the Boys Basketball game against Daleville. The guest of honor for the game will be Randolph Southern's own Ike Dalzell.
Read Full Story »

Girl, 11, to get wheelchair makeover for Barrier Free 5K

01/27/17
The city of Boynton Beach is putting on the fifth annual Barrier Free 5K Chairty Run, Walk & Roll at Congress Avenue Barrier Free Park.

The night before, the city is having Magic Wheels & Special Deals, and will unveil a Magic Wheelchair, being cuilt by the city's project manager Kevin Ramsey and Boynton Beach Police Officer Will Rodriguez for 11-year-old Emma Pietrafesa.

Emma, a student at Atlantis Academy in Coral Springs, was born with Cornelia de Lange syndrome.
Read Full Story »

Realtors® Association to Host 5th Annual Barrier Free 5K Charity Run

01/26/17
Washington, D.C. -- The Realtors Association of Palm Beaches (RAPB), in partnership with the City of Boynton Beach, will host their 5th Annual Barrier Free 5K Charity Run, Walk & Roll at Congress Avenue Barrier Free Park on Saturday, February 11.

RAPB is proud to announce that our honorary starter will be 11-year-old Emma Pietrafesa, who has Cornelia de Lange syndrome.
Read Full Story »

Coffee Shop, CPD Team Up to Raise Funds for Officer's Ill Daughter

01/07/17
Members of the Charlottesville community didn't let the snow stop them from coming out Saturday afternoon to donate to a police officer's family in need. Shenandoah Joe on Preston Avenue helped raise some cash for Charlottesville police officer Eric Ketchum's daughter Jolie.

Jolie was born with Cornelia de Lange syndrome, a rare genetic disorder that causes a range of physical, cognitive and medical challenges.  
Read Full Story »

Donations sought to help daughter of city police officer

01/06/17
The young daughter of a Charlottesville police officer is recovering from a serious illness, and on Saturday, Shenandoah Joe Coffee Roasters will match all donations to help with her medical expenses.
Read Full Story »

Community News For The Valley Edition

01/03/17
Avon -- The Cornelia de Lange Syndrome Foundation raised over $6,000 on Giving Tuesday in November.

"This platform helps us maximize our fundraising outreach and create awareness for CdLS and the Foundation," said Development Manager Kristi Larson.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

NORD News for November The Voice of the Community

11/16/16
CDLS Foundation announces research grants.
Read Full Story »

Bournemouth charity helps man with disabilities secure job

10/18/16
A Bournemouth charity has helped another young person with disabilities secure a job.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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
Read Full Story »

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?

Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.

Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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).
Read Full Story »

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.
Read Full Story »

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
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.

Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

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.
Read Full Story »

'Please Save Christmas' plea

12/24/13 , www.nwfdailynews.com
FORT WALTON BEACH -- What began as a plea to help save the holidays is now a family asking for help just to survive.
Read Full Story »

Stowers team links dampened mTOR signaling with the developmental disorder Roberts syndrome

12/04/13 , http://www.thealmagest.com/stowers-team-links-dampened-mtor-signaling-developmental-disorder-roberts-syndrome/5754
Children born with developmental disorders called cohesinopathies can suffer severe consequences, including intellectual disabilities, limb shortening, craniofacial anomalies, and slowed growth. Researchers know which mutations underlie some cohesinopathies, but have developed little understanding of the downstream signals that are disrupted in these conditions.
Read Full Story »

El Paso mom, daughter cope with genetic disorder

11/17/13 , http://www.theeagle.com/news/texas/article_4f2ac5de-4e09-11e3-b5a8-001a4bcf887a.html?mode=print
EL PASO -- There are times -- many times -- when Lily Lopez grows tired of the curious looks she gets when she takes her 10-year-old daughter Kayla out in public. "It's hard enough on us as it is without all those people staring at us, saying 'Oh my God, did you see the baby? Did you see her?' I still haven't gotten used to it and it still gets on my nerves, but I've learned to ignore it better."
Read Full Story »

El Paso mom, daughter cope with genetic disorder

11/11/13 , http://www.wral.com/el-paso-mom-daughter-cope-with-genetic-disorder/13091274/?print_friendly
EL PASO, TEXAS -There are times -- many times -- when Lily Lopez grows tired of the curious looks she gets when she takes her 10-year-old daughter Kayla out in public. "It's hard enough on us as it is without all those people staring at us, saying 'Oh my God, did you see the baby? Did you see her?' I still haven't gotten used to it and it still gets on my nerves, but I've learned to ignore it better."
Read Full Story »

American Legion Child Welfare Foundation Awards Over $644,005 in Grants

11/11/13 , http://www.businesswire.com/news/home/20131016006543/en/American-Legion-Child-Welfare-Foundation-Awards-644005%C2%A0in
INDIANAPOLIS--(BUSINESS WIRE)--The American Legion Child Welfare Foundation, in its 59th year, has awarded $644,005 to 21 non-profit organizations. These grants, determined during the annual meeting of the Board of Directors, held at the Sheraton Hotel City Centre in Indianapolis, Indiana on Sunday, October 13, 2013, have been awarded to support worthwhile youth-serving projects and to assist in the dissemination of information to the general public and specific target groups. The following is a brief summary of the grants awarded for 2014.
Read Full Story »

1 in 10,000: Love between family, girl with genetic disorder inspires

11/04/13 , http://www.elpasotimes.com/living/ci_24447145/1-10-000-love-transcends-genetic-disorder#
There are times -- many times -- when Lily Lopez grows tired of the curious looks she gets when she takes her 10-year-old daughter Kayla out in public. "It's hard enough on us at is without all those people staring at us, saying 'Oh my God, did you see the baby? Did you see her?' I still haven't gotten used to it and it still gets on my nerves, but I've learned to ignore it better."
Read Full Story »

Special People Meet - CAD Conference

10/23/13 , http://www.woodtv.com/community/special-people-meet
Get out and meet other families with children with special needs this Saturday. Visit the article link to view the video interview.
Read Full Story »

'I felt great'

10/21/13 , http://www.thedigitalcourier.com/news/forestcity/x1703656356/-I-felt-great#.UmGmULQ0S2k.facebook
FOREST CITY -- Homecoming at Chase High School was a little different this year. The Trojans came out of it with a win and the crowd was full of alumni but it was different because a sophomore, Kaylee Parris, won homecoming queen.
Read Full Story »

The American Legion Child Welfare Foundation Awards Over $644,005 in Grants

10/17/13 , http://www.fortmilltimes.com/2013/10/16/3030427/the-american-legion-child-welfare.html
INDIANAPOLIS -- The American Legion Child Welfare Foundation, in its 59th year, has awarded $644,005 to 21 non-profit organizations. These grants, determined during the annual meeting of the Board of Directors, held at the Sheraton Hotel City Centre in Indianapolis, Indiana on Sunday, October 13, 2013, have been awarded to support worthwhile youth-serving projects and to assist in the dissemination of information to the general public and specific target groups. The following is a brief summary of the grants awarded for 2014.
Read Full Story »

Racing for unity

10/16/13 , http://columbustelegram.com/news/local/article_f5e1abb9-f8dc-50b2-974f-46aca8414745.html
COLUMBUS -- With each step Heath Zinnel took, a smile began to grow on his face.
Read Full Story »

Arzillo softball tournament raising funds for CdLS

10/16/13 , http://www.suffolknewsherald.com/2013/10/16/arzillo-softball-tournament-raising-funds-for-cdls/
For those interested in playing softball for a worthy cause this weekend, there is still a chance to do so.
Read Full Story »

4th Annual Brew & BBQ for CdLS

09/30/13 , http://clatl.com/atlanta/4th-annual-brew-and-bbq-for-cdls/Event?oid=9167394
Includes Souvenir Pint Glass, Beer Sampling, Barbeque Dinner, Live Music, Silent Auction and Brewery Tours benefiting the national CdLS Foundation.
Read Full Story »

Cranford resident praises daughter's special hospital

09/06/13 , http://www.nj.com/cranford/index.ssf/2013/09/cranford_resident_praises_daug.html
Mike and Liz Geraghty of Cranford are the parents of Bozena Geraghty, a resident at the Matheny Medical and Educational Center, a special hospital and educational facility in Peapack for children and adults with medically complex developmental disabilities. Bo was born with Cornelia de Lange syndrome, a genetic disorder that causes a range of physical, cognitive and medical challenges. Bo is 22-years-old and has been at Matheny for four years.
Read Full Story »

Haven Horse Ranch partners with Next Step Therapy

09/06/13 , http://www.beachesleader.com/article_5504c73c-1639-11e3-b55b-001a4bcf887a.html
In an effort to better serve the needs of the residents of Northeast Florida, Haven Horse Ranch, St. Augustine's therapeutic riding center has partnered with Next Step Therapy. Next Step Therapy is based in St. Augustine and provides physical therapy, occupational therapy, and speech therapy services to pediatric patients with diagnoses that include Down's Syndrome, seizure disorders, Cornelia de Lange Syndrome, mitochondrial disorders, cerebral palsy, and developmental delays with a specialty in pediatric vestibular disorders.
Read Full Story »

4th Annual Brew & BBQ for CdLS at SweetWater

09/05/13 , http://atlantabuzz.com/event/4th-annual-brew-bbq-for-cdls-at-sweetwater/
Includes Souvenir Pint Glass, Beer Sampling, Barbeque Dinner, Live Music, Silent Auction and Brewery Tours benefiting the national CdLS Foundation.
Read Full Story »

Owen Leavey, won five trophies at the Diva Dance Competition

08/16/13 , http://www.stowetoday.com/stowe_reporter/community/article_a9afb9f4-05b8-11e3-8970-001a4bcf887a.html
Owen Leavey, a student at Stowe High School, won five trophies, including "Overall High Score," at the Diva Dance Competition held Wednesday to Friday, July 17 to 19, in Plymouth, Mass. Part of the competition's proceeds are donated to the Cornelia De Lange Syndrome Foundation.
Read Full Story »

Therapeutic Partnership Announced

08/09/13 , http://staugustine.com/living/health/
Haven Horse Ranch therapeutic riding center announced a partnership with Next Step Therapy, a St. Augustine-based business which provides physical, occupational and speech therapy services pediatric patients. They service patients with diagnoses including Down Syndrome, seizure disorders, Cornelia de Lange Syndrome, mitochondrial disorders, cerebral palsy and developmental delays with a specialty in pediatric vestibular disorders.
Read Full Story »

Southington Exhibition to Reward Artists with Disabilities

07/26/13 , http://www.myrecordjournal.com/
SOUTHINGTON -- Three years ago, Carole Milano's older sister, Kathleen Sena, died at 68. Milano often finds herself reminiscing about their younger days, which she was in charge of taking care of Sena after school.
Read Full Story »

Our Angels

06/22/13 , Spencer Daily Reporter
The Bob and Kate Shaw family is hosting the Our Angels Concert - A Night to Remember Hud and Angela Shaw and all CdLS families at 8 p.m. Saturday, June 22 at the Sami Center in Spirit Lake. Hud passed away at the age of 3 from a viral infection. Angela passed away at the age of five.
Read Full Story »

OUR ANGELS Shaw family spreading awareness for CdLS

06/19/13 , http://www.dickinsoncountynews.com/
Angela Shaw had a big heart. She also had a playful personality and a strong will to live. A rare genetic disease called Cornelia de Lange Syndrome (CdLS) robbed Angela of a full lifetime here on earth. She would've been 40 years old in 2013. Her parents, Bob and Kate have spent the last 35 years spreading awareness about the disease.
Read Full Story »

GALLAGHER: After decades, bonds forged over rare disease still strong

06/19/13 , http://siouxcityjournal.com/
SPIRIT LAKE, Iowa | Four decades later, Bob Shaw talks about the preciousness in the photo. Pausing, he thinks of two babes he and wife Kathleen lost. Moving ahead, he tells their story.
Read Full Story »

UCI receives second five-year designation as Cornelia de Lange Syndrome Center of Excellence

05/30/13 , http://www.bio.uci.edu/
Irvine, Calif. - The Cornelia de Lange Syndrome (CdLS) Foundation recently designated the University of California, Irvine, as a Cornelia de Lange Syndrome Center of Excellence for a second five-year period. This designation recognizes continued excellence and outstanding achievement in research work related to CdLS by five UC Irvine faculty.
Read Full Story »

'Augie's Angels' event Saturday

05/23/13 , SangerHerald.com
Sanger resident Maria Soto is hoping the generosity of the community can help provide much-needed medical treatment for her 18-year-old son Augie.
Read Full Story »

Thomaston Children's Festival to be held May 25

05/22/13 , http://www.penbaypilot.com/
THOMASTON -- The 2nd Annual Thomaston Children's Festival will be held on Saturday, May 25 from 10 a.m. to 2 p.m. on the Thomaston Academy lawn and will be a day of fun for children of all ages as well as an opportunity to celebrate the town of Thomaston.
Read Full Story »

Nicholson Raises Awareness for CdLS

05/11/13 , http://www.journalreview.com/
As Addison Brown made her way into Nicholson Elementary School on Friday morning several children swarmed around the tiny girl with bouncy brown curls and a huge smile.
Read Full Story »

Littleton Woman Helps Raise Awareness of Cornelia de Lange Syndrome

05/11/13 , http://www.wickedlocal.com/
Littleton -- Diane Lessa of Littleton is joining families across the country to raise awareness of Cornelia de Lange Syndrome or CdLS on National CdLS Awareness Day, Saturday, May 11.
Read Full Story »

Finding Her Place

05/10/13 , http://www.thepampanews.com/
For Elaineah Jackson, fitting in among her peers has never been easy. Jackson, 11, of Pampa, suffers from Cornelia de Lange Syndrome (CDLS) which has left a couple of her fingers slightly deformed. But that is Elaineah's only visible physical handicap and, if no one had told you she deals with CDLS, you may never know it just by looking at her.
Read Full Story »

May 11 is CdLS Awareness Day

05/10/13 , http://blogs.detroitnews.com/
It's amazing how four letters can change your life. Four letters have had a profound impact on the person I am today, the mother I am, and the wife. The letters are "CdLS" and they stand for a little heard of genetic condition called Cornelia de Lange Syndrome.
Read Full Story »

Asheville to observe National Cornelia de Lange Syndrome (CdLS) Awareness Day

04/25/13 , http://www.mountainx.com/article/49736/Asheville-to-observe-National-Cornelia-de-Lange-Syndrome-CdLS-Awareness-Day
Asheville, NC - Through a proclamation by Mayor Terry Bellamy, the City of Asheville joins cities, states and individuals nationwide in observing May 11th as National Cornelia de Lange Syndrome (CdLS) Awareness Day.
Read Full Story »

Teen with mind of toddler falls in government aid loophole after father dies

04/17/13 , myfox8.com
LEWISVILLE, N.C. -- Max Butkus is one of many children with a disability who are being denied government assistance because one of their parents has died.
Read Full Story »

Online votes sought for wheelchair accessible vehicle

04/09/13 , Janesville Gazette
TOWN OF BELOIT -- For 3-year-old Landon Wilson, a trip to the doctor is quite the process.
Read Full Story »

Organization Inducts Couple

04/05/13 , http://www.news-sentinel.com
The Cornelia de Lange Syndrome Foundation announced Frederick and Linda Hasecke will be honored as inductees of the first annual de Lange Society. 
Read Full Story »

National nonprofit honors local woman

03/27/13 , Seacoastonline.com
CAPE NEDDICK -- The Cornelia de Lange Syndrome (CdLS) Foundation recently announced that Kathryn Wagner will be honored as an inductee in the de Lange Society.
Read Full Story »

Family turns to online contest to help transport child

03/26/13 , www.channel3000.com
A Town of Beloit family is turning to an online contest to find an easier way to transport a child with special needs. 

Landon Wilson, 3, has a team of 10 doctors working to keep him healthy and alive.
Read Full Story »

Beloit Boy needs Stateline Help

03/24/13 , Mystateline.com
Three year old Landon Wilson has been a fighter since the day he was born. He was diagnosed with Cornelia De Lange Syndrome shortly after his birth.
Read Full Story »

Danbury Resident Honored for Years of Volunteerism

03/23/13 , WLAD Radio 800am (Danbury, CT)
Danbury resident, Norman Winnerman, is being honored as an inductee of the first annual de Lange Society. 

Winnerman became involved with the Foundation in the summer of 1989, shortly after his second granddaughter, Alison, was born with CdLS. 

Read Full Story »

National Nonprofit Honors Volunteers From Around The Country

03/22/13 , Courant.com
The Cornelia de Lange Syndrome (CdLS) Foundation is proud to induct 40 individuals from around the country to the first annual de Lange Society.
Read Full Story »

Bristol Resident Promoted at National Nonprofit

01/31/13 , Farmington and Avon Patch.com
Bristol, CT (January 30, 2013)-- Kelly Brown of Bristol has been promoted to assistant executive director at the Cornelia de Lange Syndrome (CdLS) Foundation located in Avon. 

Liam Hilferty of Birmingham is one of three with genetic mutation

01/14/13 , Daily Local News - Chester County, PA
Monday, January 14,2013- Liam Hilferty and his fraternal twin brother, Joseph, of Birmingham, were born in August 2000 and were seemingly healthy -- until Liam had respiratory issues the next day.

Riverton Resident Tapped To Lead National Nonprofit

11/19/12 , Hartford Courant
The Board of Directors of the Cornelia de Lange Syndrome (CdLS) Foundation unanimously approved the appointment of Marie Concklin-Malloy as its new executive director, effective Nov. 10. 

Local Man Tackles Ironman Triathlon for CdLS Foundation

11/15/12 , Hartford Courant
Frank Mairano, of Collinsville, Conn., is no stranger to tough races. He has run 20 marathons and sees no sign of stopping anytime soon. 

Three Join Hartford Foundation Staff

11/14/12 , Hartford Courant
Jennyfer Holmes of New Britain has been named scholarship and donor services officer at the Hartford Foundation for Public Giving, the community foundation for the 29-town Greater Hartford region. Read full story >

Local woman runs in NYC Race to benefit those with rare syndrome Read more: Holly Springs Sun - Local woman runs in NYC Race to benefit those with rare syndrome

10/29/12 , Holly Springs Sun
Claire Lindsay of Holly Springs, NC, is running in the ING New York City Marathon on November 4 as a member of the Cornelia de Lange Syndrome (CdLS) Foundation's, Team CdLS. 

Locals Raise Awareness, Funds For Rare Genetic Disorder

10/10/12 , Hartford Courant
The Cornelia de Lange Syndrome (CdLS) Foundation, a national nonprofit family support organization, is proud to have five runners as part of Team CdLS in the 2012 ING Hartford Half Marathon and 5k on Saturday, Oct. 13. Read full story >

Marathon Man

08/15/12 , Journal & Topics Newspapers Online
A Mt. Prospect man will run for the second year in a row in this October's Bank of America Chicago Marathon to raise money for his daughter who is battling a genetic disease. 

Novel Cornelia de Lange syndrome gene discovered

08/13/12 , MedWire
MedWire News: Scientists have discovered that mutations in the histone deacetylase 8 gene (HDAC8) can cause the rare genetic disorder known as Cornelia de Lange syndrome (CdLS), which is characterized by intellectual disability, limb deformity, and other disabilities resulting from problems in early development. Read full story >

Elmhurst professor receives honor from national organization

07/09/12 , MySuburbanLife.com
The Cornelia de Lange Syndrome (CdLS) Foundation honored Elmhurst College professor Marjorie Goodban with the John King Award on June 23. 

Guy Pearce's Life Lessons From Wife And Sister

06/11/12 , IMDB
Australian actor Guy Pearce has credited his wife and his sister with keeping him grounded throughout his Hollywood career. 

Local runner commits to Chicago Marathon -- for a cause

09/22/11 , Well Commons, Lawrence, KS

Cornelia de Lange Syndrome affects between 1 in 10,000 and 1 in 30,000 people. By those statistics, somewhere between three and eight people in Lawrence are currently living with the syndrome.

Read full story.

NASCAR Nationwide Series Driver to Promote CdLS Foundation at Final Home Game of Bristol White Sox

08/30/11

Abingdon, VA (August 29, 2011)--On Tuesday, August 30, NASCAR Nationwide Series driver Eric McClure will partner with the Bristol White Sox at their final home game of the season to increase awareness of the Cornelia de Lange Syndrome (CdLS) Foundation. The 32-year-old driver became passionate about the CdLS Foundation after meeting a special young lady with CdLS, Tess Ziemann, and her family at Food City Family Race Night in 2007.

Read Full Story »

Toddler raising awareness of CdLS

08/16/11 , WLFI, Indianapolis
Angie Brown flipped through pictures of her daughter Addison as an infant. "She doesn't have the typical baby book. Her baby book is a journal of nothing but tests," Brown explained.
Read Full Story »

Photographer to run NY Marathon to fight disorder

07/27/11 , Cherokee Tribune

Aimee Benson is no stranger to marathons.The 5-year Canton resident and entrepreneur, who this year launched her own business -- Aimee Benson Photography -- has participated in four 26.2-mile races.

Now, Benson is in training for one of the pinnacle events for marathon runners -- the ING New York City Marathon. But this time around, Benson is running for a cause.

Read Full Story »

Walk planned for Seabrook boy with rare disorder

06/07/11 , Hampton Union

Nothing makes time pass more quickly than an annual event, and as the 4th annual "Hoof-it for Hunter" walk approaches, the changes in 5-year-old Hunter Knowles in the year that has passed are nothing short of amazing.

Read more.

Motorcyclist crossing country for grandson

05/20/11 , Cincinnati Enquirer

Ken Fouts' 42-year career as a television director took him to a World Series, a Super Bowl, a summer and winter Olympics and several thousand other sporting events. In all, he traveled about 4 million miles

Read more.

Toddler Teaches Life Lessons

05/17/11 , Journal Review

Today isn't Addison Brown's birthday, but it's a significant day just the same for the Crawfordsville toddler and her family.

Read more.

Villager's cross-country motorcycle trek aims to raise funds, awareness for Cornelia de Lange Syndrome

05/17/11 , Daily Sun

For Adrian Raya-Fouts' family, birthdays are a big deal. Born with a severe case of Cornelia de Lange Syndrome -- a genetic disorder that presents physical, cognitive and medical challenges -- doctors did not have a lot of hope for Adrian.

Read more.

Baby Cambria surprises family with improvements

05/09/11 , Yuma Sun

Soon after Blair Flint's daughter, Cambria, celebrated her first birthday, she surprised everyone by eating on her own. It might not be a big deal for most babies, but Cambria was born with Cornelia de Lange syndrome (CdLS), a rare congenital condition that makes it difficult to eat because oral muscles don't work well.
 

Read more.

Vacaville Residents Deal with CdLS

05/06/11 , Vacaville Reporter

With their dark hair, thin eyebrows, small stature, similar builds and winsome smiles, Anya Janoski and Claudia Tiongson could be mistaken for sisters.

Read more.

Suicide Skateboards: Young man with CdLS follows his dreams

02/28/11 , Hard Times Magazine

Owner and Ocean City local Josh Levis takes pride in not only his merchandise, but also the message behind his company. He has had to overcome more than this fair share of setbacks, but has always been determined to make the best of things. When Josh was four years old, his parents told him that he had been diagnosed with CdLS, or Cornelia de Lange Syndrome.

Read more.

Technology Gives Young Boy a Voice

02/09/11 , CBS 3 Philadelphia

For nine-year-old Andrew Patitucci, music was once the only form of expression. Born with Cornelia de Lange Syndrome, the developmental disorder affected his size and speech. 

Read more.

How you can help a local charity give back

12/15/10 , http://www.kcci.com/news/how-you-can-help-a-local-charity-give-back/30246406
DES MOINES, Iowa --A local charity is helping families through hardships this holiday season.

Read Full Story »

Big sis runs marathon for sibling

11/26/10 , Lake County Journal
Donning running shoes and determination, Antioch resident Melissa Bernhardt will take to the streets of Chicago on Oct. 10 to help ...
Read Full Story »

Uphill battle: Marathon runner takes to pavement for good cause

07/09/10 , Courier Press
Running shoes will hit the pavement. Paper cups filled with water will crumple to the
ground. And 26.2 miles will eventually fade... 
Read Full Story »

Mom raises awareness of son's rare disorder

12/14/09 , Norwich Bulletin
With tiny hands and feet, Ryan O'Connell looks like a child - but he is 24 years old. When he sees his mother, Shari Drake, he reaches for her.
Read Full Story »

Behind the Marathon Mission

10/18/09 , The Saratogian
A family dedicated to caring for their disabled son would do anything to raise public awareness of his rare syndrome, including running a marathon.
Read Full Story »

Leading the Way

10/01/09 , Daily Breeze
One of Julie Gonella's darkest moments in raising a child with special needs came about 20 years ago, but the Manhattan Beach resident remembers it clear as day...
Read Full Story »

Rare condition makes life challenging for 7-year-old, family

06/01/09 , Statesville R&L
Kimberly Herrera waited at the end of the Sloans' driveway for the school bus doors to swing open. She heard it coming up the road before it reached Four Winds Drive....
Read Full Story »

One Family's Saving Grace

06/01/09 , South Mississippi Living
Ella Grace Musial is a sweet and happy one-year-old. Although she was born with a rare congenital disease known as Cornelia de Lange Syndrome....
Read Full Story »

Hunter is Knowle's family 'miracle'

05/29/09 , Hampton Union
Everybody loves Hunter....
Read Full Story »

Educators receiving education

05/14/09 , Iowa Park Leader
Two educators have received an education after taking in a young man diagnosed with Cornelia de Lange Syndrome....
Read Full Story »

City mom feels blessed having a CdLS child

05/09/09 , Columbus Telegram
Rachelle Riedmiller always knew she wanted to be a mom....

Read Full Story »

CdLS Foundation Celebrates Awareness Day May 9: Parents learn to advocate for children with uncommon syndrome

05/04/09 , Journal Newspaper Group
As the 20th anniversary of Cornelia de Lange Syndrome (CdLS) Awareness Day is celebrated on May 9, many people still ask, "Cornelia-d-what?"...
Read Full Story »

Ben & Jane Young man has made tremendous strides in overcoming handicap of rare congenital syndrome.

05/04/09 , Laconia (NH) Daily Sun.

Read Full Story »