Recent News in 2017

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Cornelia de Lange Syndrome (CdLS) Foundation Announces New Major Gifts Director

The Cornelia de Lange Syndrome (CdLS) Foundation is proud to announce the appointment of Kati Liss-Hensel as its Major Gifts Director.

This new position was created to fulfill the Foundation's initiative of focusing on connections with donors. Kati will continue to build upon the current development program and work to strategically expand major gifts, while implementing a donor stewardship and cultivation program.
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25th Annual Charity Golf Tournament Raises More Than $70,000 for Rare Disorder

Avon-based national nonprofit organization the Cornelia de Lange Syndrome (CdLS) Foundation held its 25th annual CdLS Foundation New England Charity Golf Tournament at Ipswich Country Club on Monday, May 22.
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Cornelia de Lange Syndrome (CdLS) Foundation Announces New Executive Director

The Cornelia de Lange Syndrome (CdLS) Foundation is proud to announce the appointment of its new Executive Director Morrisette "Bonnie" Royster.
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CdLS in the News

'Amazing people' work at Opportunity Enterprises

"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.
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Two women turn disabilities into strengths and employment

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.
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Samantha Manns: Raising Funds While Riding a Bike

Samantha Manns has gone above and beyond for the CdLS Foundation, participating in a 40-mile bicycle ride fundraiser with just three weeks' notice.
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Two exceptional special needs students among 125 Bay High graduates

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."
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Educating and accepting

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.
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'When you wish upon a star'

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.
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Fountain City family hoping for service dog

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

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


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.

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Sweet Passover treat offered for special needs Jewish congregants

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

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.
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Searching for a place to call home


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.

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


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.

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Another family who loves foster children

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.
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Winterfest more like spring blast

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.
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Challenged 10-year-old thrilled with her Camaro wheelchair

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.
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Boynton Beach employees build 'magic' wheelchair for young girl

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

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.
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Randolph Southern CdLS Awareness

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

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

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

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.  
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Donations sought to help daughter of city police officer

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.
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Community News For The Valley Edition

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.
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