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Recent News in 2013

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News Releases

For Third Consecutive Year, National Nonprofit Achieves Highest Rating from Charity Navigator

11/05/13
The Cornelia de Lange Syndrome (CdLS) Foundation achieved its third, consecutive 4-star rating for sound fiscal management and commitment to accountability and transparency from Charity Navigator, the country's largest and most-utilized independent evaluator of charities.
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London Woman Racing in NYC Marathon to Raise Awareness, Funds for Rare Disorder

10/23/13
Sarah Zaman, of London, England, is preparing a trip across the pond for the ING New York City Marathon on November 3. Zaman is running in hopes of raising awareness and funds for the Cornelia de Lange Syndrome (CdLS) Foundation, as one of the seven runners on Team CdLS in the New York City race.
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Local Mother Racing in NYC Marathon to Raise Awareness, Funds for Rare Disorder

10/17/13
Portsmouth, NH - (October 16, 2013) Novice marathoner Karen Lyons, of Portsmouth, NH, is preparing for the ING New York City Marathon on November 3. Lyons is running in honor of her 5-year-old son, Luke, who was born with Cornelia de Lange Syndrome (CdLS).
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Softball Tournament Raises Awareness, Funds for Genetic Disorder

10/08/13
What - The 3rd Annual Arzillo Industries Invitational Softball Tournament to benefit the Cornelia de Lange Syndrome Foundation 
When - October 19 & 20 from 6:30 to 9:30 p.m. 
Where - City View Park, Virginia Beach, VA 

 Virginia Beach, VA - (October 8, 2013) The 3rd Annual Arzillo Industries Softball Tournament takes place October 19 & 20 at City View Park in Virginia Beach. The event is hosted by the Arzillo family of Virginia Beach, VA, parents of Steven, 19, who was born with CdLS, a rare genetic disorder that causes a variety of physical, cognitive and developmental disabilities. 
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California Local Races in Honor of Sister with Rare Genetic Disorder

09/23/13
Chino Hills, CA - (September 23, 2013) The Cornelia de Lange Syndrome (CdLS) Foundation, a national nonprofit family support organization, is proud to have Mary Drexler representing Team CdLS in the Manhattan Beach 10K on Sunday, October 5. Drexler, who is also on the planning committee for the 2014 CdLS Foundation National Family Conference in Costa Mesa, CA, is running in honor of her sister, Mandy, who was born with CdLS.
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Couple Races in Honor of Deceased Son with Rare Genetic Disorder

09/23/13
Manhattan Beach, CA - (September 23, 2013) Six years have passed since Julie and Roy Gonella first mourned the loss of their son, Mikey, who was born with Cornelia de Lange Syndrome (CdLS). To honor his memory, and to help raise awareness of this little-known syndrome, the Gonellas are rejoining Team CdLS for a third time at the Manhattan Beach 10K on Sunday, October 5.
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Local Parents Bring Awareness, Raise Funds for Rare Genetic Disorder

09/12/13
Atlanta, GA - (September 12, 2013) The 4th Annual Brew & BBQ for CdLS takes place September 28 from 6:30 to 9:30 p.m. at SweetWater Brewery in Atlanta. The event is hosted by the Musials, parents of Ella Grace, 5, and the Risslands, parents of Riley, 9, both of Alpharetta, GA. Their children were born with CdLS, a rare genetic disorder that causes a variety of physical, cognitive and developmental disabilities.
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Cornelia de Lange Syndrome Foundation Awards Research Grants

09/12/13
Avon, CT (September 12, 2013)-- As part of its 2013 small grants program, the Cornelia de Lange Syndrome (CdLS) Foundation awarded $23,000 to researchers studying various aspects of CdLS. The following projects were funded:
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25th Annual Charity Golf Tourney to Benefit Individuals with Rare Disorder

09/04/13
St. Louis, MO - (August 28, 2013) On September 16, Madison County Wood Products (MCWP) and Pallet Logistics Management are celebrating the 25th Annual Madison County Wood Products Golf Tournament at Pevely Farms Golf Club in St. Louis, which benefits the Cornelia de Lange Syndrome (CdLS) Foundation.
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Pennsylvania Family Runs to Raise Awareness for Rare Genetic Disorder

07/02/13
Philadelphia, PA (July 2, 2013)-- Mary Ann Feehan is leaving her good shoes at home for the 2013 Merrell Down & Dirty 5K in Philadelphia, PA, to cheer on her son.
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Family Races in Honor of Newborn with Rare Syndrome

06/11/13
Avon, CT (June 11, 2013) - The Cornelia de Lange Syndrome (CdLS) Foundation, a national nonprofit family support organization, is proud to have eight runners representing Team CdLS in the 2013 Merrell Down & Dirty 5k in Hartford on Sunday, June 23.
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21st Annual Charity Golf Tourney to Benefit Those with Rare Disorder

05/17/13
Ipswich, MA - (May 6, 2013) The Cornelia de Lange Syndrome (CdLS) Foundation, a national nonprofit family support organization, is hosting its sold out 21st annual New England Golf Tournament for CdLS at Ipswich Country Club in Ipswich on May 20.
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Annual Awareness Day for Rare Disorder Gears Up Nationwide

05/01/13
Avon, CT (May 1, 2013)-- Families across the country have been reaching out for months, raising awareness among politicians, neighbors and members of their community. They are requesting proclamations, distributing bookmarks and hanging fliers.
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Foundation Honors Volunteers from Around the Country

03/20/13
The Cornelia de Lange Syndrome (CdLS) Foundation is proud to induct 40 individuals from around the country to the first annual de Lange Society. 

"We are so thankful for these volunteers who have given so much time and dedication over the last 20 years, and beyond," said Marie Malloy, Executive Director of the Foundation.
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Local Nonprofit to Observe Rare Disease Day

02/22/13
The Cornelia de Lange Syndrome (CdLS) Foundation will be joining the National Organization for Rare Disorders (NORD) and others around the world in observing World Rare Disease Day on February 28, 2013. On this day, millions of patients and their families will share their stories to focus a spotlight on rare diseases as an important global public health concern.
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National Nonprofit Makes Historic Board of Directors Appointment

02/18/13
Greensboro, NC (February 19, 2013)-- The Cornelia de Lange Syndrome (CdLS) Foundation is proud to announce that Maegan Lowrey has joined its Board of Directors, which serves as a guide for the national nonprofit, located in Avon, CT.
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Bristol Resident Promoted at National Nonprofit

01/30/13
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. 

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Catonsville Resident Joins Board of Directors for National Nonprofit

01/25/13
Catonsville, MD (January 17, 2013)-- The Cornelia de Lange Syndrome (CdLS) Foundation is proud to announce that Julia O'Connor, Ph.D. has joined its Board of Directors, which serves as a guide for the national nonprofit, located in Avon, CT.
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Mother Races in Memory of Son

01/18/13
Goldsboro, NC (January 18, 2013)-- Baylen was born June 6, 2010. When he was born, Baylen's mother found out he had a rare genetic disorder, called Cornelia de Lange Syndrome (CdLS). His family gave Baylen the nickname, "Super B," because despite the odds, he kept fighting.

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CdLS in the News

'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.
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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.
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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."
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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."
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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.
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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.
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'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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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'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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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. 
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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.
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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.
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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.
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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. 

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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.
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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.