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

06/13/17
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

06/08/17
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

01/11/17
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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Cornelia de Lange Syndrome Foundation Raises Over $6,000 on Giving Tuesday

12/23/16
The Cornelia de Lange Syndrome Foundation (CdLS) raised over $6,000 in less than 24 hours on Giving Tuesday in November. The global day of giving harnesses the collective power of individuals, communities and organizations to encourage philanthropy and to celebrate generosity worldwide. Giving Tuesday is held annually on the Tuesday after Thanksgiving and the widely recognized shopping events Black Friday and Cyber Monday to help kick-off the holiday giving season. 
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Cornelia de Lange Syndrome Foundation Joins the Global Giving Tuesday Movement

11/22/16
The Cornelia de Lange Syndrome Foundation (CdLS) has joined Giving Tuesday, a global day of giving that harnesses the collective power of individuals, communities and organizations to encourage philanthropy and to celebrate generosity worldwide. Occurring this year on November 29, Giving Tuesday is held annually on the Tuesday after Thanksgiving and the widely recognized shopping events Black Friday and Cyber Monday to kick-off the holiday giving season.
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Parents Host "One Love, One Heart 5K" to Benefit Rare Disorder, Daughter

11/02/16
Jim and Jen Pomfret are preparing to mark the twelfth year of what is called the hottest 5K of December. As the One Love, One Heart 5k slogan reads, "One love refers to the universal love and respect expressed by all people for all people." At the event, this love is directed towards those who have a rare genetic disorder called Cornelia de Lange Syndrome (CdLS). This includes their daughter, Maya.
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28th Annual Charity Golf Tourney Benefits Individuals with Rare Disorder

10/21/16
The Cornelia de Lange Syndrome (CdLS) Foundation, a national nonprofit family support organization, held its 28th annual CdLS Charity Golf Tournament at the Tapawingo National Golf Club in St. Louis, MO, on October 10.
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Foundation for Rare Genetic Disorder Funds Three Research Projects

09/01/16
Avon, CT - (September 1, 2016) As part of its 2016 Small Grants Program, the Cornelia de Lange Syndrome (CdLS) Foundation awarded $45,000 to researchers studying various aspects of the genetic disorder. 
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National Nonprofit Teams Up With PGA Tournament Charity Program

07/11/16
AVON, CT (July 25, 2016) -- The Cornelia de Lange Syndrome (CdLS) Foundation of Avon, CT, is proud to partner with the Travelers Championship for the first time to participate in their Birdies for Charity fundraising program. 
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CdLS Foundation earns coveted 4-star rating from Charity Navigator

06/25/16

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

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Locals Run Saratoga Palio for Rare Genetic Disorder, Family Members

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

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Eating Pizza, Raising Funds for Rare Genetic Disorder

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

07/14/15

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

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CdLS FOUNDATION EARNS COVETED 4-STAR RATING FROM CHARITY NAVIGATOR

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

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

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

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

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

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

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

12/03/12
Avon, CT (December 3, 2012)-- The Cornelia de Lange Syndrome (CdLS) Foundation achieved its second, consecutive 4-star rating from Charity Navigator for sound fiscal management and commitment to accountability and transparency.
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WHS Grad Named as Communications Coordinator for National Nonprofit

11/19/12

Avon, CT (November 16, 2012)-- The Cornelia de Lange Syndrome (CdLS) Foundation is thrilled to announce the appointment of Brenda J. Shepard as its new communications coordinator. Shepard will take over public relations, social media outreach and publications for the national nonprofit, located in Avon, CT.  

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CdLS Foundation Appoints Executive Director

11/16/12
Avon, CT (November 14, 2012)-- 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 November 10, 2012.
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CT Man Takes on Ironman Triathlon for Rare Genetic Syndrome

11/12/12
Collinsville, CT (November 9, 2012)-- Frank Mairano, of Collinsville, CT, is no stranger to tough races. He has run 20 marathons and sees no sign of stopping anytime soon. Mairano will swim 2.4 miles, bike 112 miles and run 26.2 miles to honor the memory of his daughter, Lisa Marie, who had Cornelia de Lange Syndrome (CdLS), along with raising funds for the CdLS Foundation.
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Team CdLS to Run in Bank of America Chicago Marathon

09/25/12
Chicago, IL - (September 25, 2012) The Cornelia de Lange Syndrome (CdLS) Foundation, a national nonprofit family support organization, is thrilled to have 13 runners from around the country as part of Team CdLS in the Bank of America Chicago Marathon.
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Locals Raise Awareness, Funds for Rare Genetic Disorder

09/18/12
Saratoga Springs, NY - (September 11, 2012) The Cornelia de Lange Syndrome (CdLS) Foundation, a national nonprofit family support organization, is thrilled to have 21 runners as part of Team CdLS in The Saratoga Palio Melanie Merola O'Donnell Memorial Race. Each Team CdLS runner raised funds to benefit the CdLS Foundation and raise awareness for this little-known syndrome in the Saratoga Springs area.
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CdLS Foundation Competes for $5 million in grants through the Chase Community Giving Program

09/18/12
Avon, CT - (September 4, 2012) The Cornelia de Lange Syndrome (CdLS) Foundation is in the running for a share of $5 million in small grants through the 2012 Chase Community Giving Program.
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Charity Team heads to Chicago

07/17/12

Team CdLS to run in Bank of America Chicago Marathon

 

CHICAGO, IL (July 16, 2012) - Twelve dedicated runners are set to participate on Team CdLS in the famous Bank of America Chicago Marathon on October 7th.  Team members are among an estimated 45,000 participants in the 26.2-mile run. The team's goal is to raise $50,000 for the CdLS Foundation, based in Avon, CT.

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Avon organization accepted into federal rare disease pilot program

07/09/12
The Cornelia de Lange Syndrome (CdLS) Foundation is one of just 34 organizations from around the country accepted into the National Institutes of Health's (NIH) Global Rare Disease Patient Registry and Date Repository (GRDR) pilot program.

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CdLS Foundation receives four-star rating

12/15/11

Charity Navigator, a premier charity evaluator, recently awarded the Cornelia de Lange Syndrome (CdLS) Foundation with their 4-star rating. This four out of four star rating is awarded to only one quarter of U.S. charities.

 

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Team CdLS heads to Chicago this fall

07/11/11

Nineteen dedicated runners are set to participate on Team CdLS in the famous Bank of America Chicago Marathon on October 9. Team members are among an estimated 45,000 participants in the 26.2-mile run. The team's goal is to raise $70,000 for the CdLS Foundation.

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Foundation funds two research projects

06/15/11
As part of its 2011 small grants program, the Cornelia de Lange Syndrome (CdLS) Foundation awarded a total of $15,000 to researchers studying various aspects of CdLS.
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Long Island girl named ambassador of Team CdLS' New York City Marathon team

06/08/11
Jenna K. of Wantagh, NY, has been named the 2011 Team CdLS Ambassador for the ING New York City Marathon. Team CdLS raises money to benefit the CdLS Foundation, a national support organization dedicated to serving families of children affected by CdLS, a little-known genetic condition. Jenna, 4, was diagnosed at birth with CdLS.
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Team CdLS names ambassador for Chicago Marathon

06/07/11
Breeze Davis of Downers Grove, IL, has been named the 2011 Team CdLS Ambassador for the Bank of America Chicago Marathon. Team CdLS raises money to benefit the CdLS Foundation, a national support organization dedicated to serving families of children affected by CdLS, a commonly unknown genetic condition. Breeze, 7, was diagnosed with CdLS at age three.
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Team CdLS names ambassador for Baltimore Running Fest

06/07/11
Stephanie Vojtecky of Hanover, PA, has been named the 2011 Team CdLS Ambassador for the Baltimore Running Festival in Baltimore, MD. Team CdLS raises money to benefit the CdLS Foundation, a national support organization dedicated to serving families of children affected by CdLS, a commonly unknown genetic condition. Stephanie, 20, was diagnosed with CdLS at age three.
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Grandfather sets off on cross-country motorcycle ride, from Manchester to San Francisco, in honor of his grandson and others with rare genetic syndrome

04/07/11

What would make a 70-year-old man ride his Harley-Davidson 3,800 miles across America? Simple: To help his grandson and other children born with Cornelia de Lange Syndrome (CdLS), a little known genetic syndrome that causes a range of medical, physical and cognitive challenges to those born with it.

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CdLS Foundation celebrates National CdLS Awareness Day, marks 30 years helping families affected by the syndrome

04/06/11

Just over 30 years ago, a group of moms and dads from across the country came together in a Maryland state park with one common goal: to make sure that no one caring for a child with Cornelia de Lange Syndrome (CdLS) would ever have to feel alone.

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Foundation receives $1,000 grant from Build-A-Bear

02/25/11
The Cornelia de Lange Syndrome (CdLS) Foundation has received a $1,000 grant from the Build-A-Bear Workshop Bear Hugs Foundation. The grant will support the Foundation's national research program.
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CdLS Foundation adds new board members

02/10/11

The Cornelia de Lange Syndrome (CdLS) Foundation has added eight new members to its Board of Directors, class of 2013.

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Team CdLS heads to Chicago, October 10

07/23/10
Team CdLS runs the Chicago Marathon, October 10, to honor and support children with Cornelia de Lange Syndrome (CdLS)...
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Team CdLS heads to New Mexico, October 17

07/20/10
Team CdLS runs the Duke City Marathon, October 17, to honor and support children with Cornelia de Lange Syndrome (CdLS)...
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Foundation awards handed out during conference

07/08/10
The Cornelia de Lange Syndrome (CdLS) Foundation recently awarded volunteers for their commitment to individuals with CdLS and...
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Teen named ambassador of Team CdLS Chicago Marathon

06/21/10
Tanaya Mulzan, a 15-year-old Sudbury girl born with Cornelia de Lange Syndrome (CdLS), has been named the 2010 Team CdLS Ambassador...
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Albuquerque girl named ambassador of area charity marathon team

06/01/10
Savannah Fernandez, a five-year-old Albuquerque girl born with Cornelia de Lange Syndrome (CdLS), has been named the 2010 Team CdLS...
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Families host motorcycle ride to benefit children with rare genetic disorder

05/27/10
The first-ever Motorcycle Ride for Cornelia de Lange Syndrome (CdLS) is Saturday, June 12, starting at Hitching Post MotorSports...
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Families clean out attic, basements to benefit children with CdLS

05/25/10
From Hawaii to Connecticut, yard sales take place Saturday, June 5, as part of the Cornelia de Lange Syndrome (CdLS) Foundation's second annual...
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Walk event raises funds in honor of New Hampshire boy with genetic syndrome

05/24/10
Hoof-it 4 Hunter, a two mile walk event to benefit the Cornelia de Lange Syndrome (CdLS) Foundation, is Saturday, June 12, at...
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CdLS Foundation adds new board members

05/20/10
The Cornelia de Lange Syndrome (CdLS) Foundation has added three new members to its Board of Directors...
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Team CdLS debuts at the Broad Street Run

04/12/10
Mike Feehan would do anything for his toddler son Conner, including running 10 miles through the streets of Philadelphia...
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Foundation announces new staff, promotions

02/09/10
The Cornelia de Lange Syndrome Foundation, a national nonprofit based in Avon, announces several new hires and promotions...
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Team CdLS debuts at the Manhattan Beach 10K

09/09/09
Nearly 40 people take to the starting line of the Manhattan Beach 10K Saturday, October 3 to raise funds for children with Cornelia de Lange Syndrome...
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Team CdLS heads to Chicago

09/08/09
Team CdLS runs the Chicago Marathon, October 11, to honor and support children with Cornelia de Lange Syndrome (CdLS)...
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Parents host 17th annual CdLS Charity Golf Tournament to benefit children with rare genetic disorder

05/14/09
The Cornelia de Lange Syndrome (CdLS) Charity Golf Tournament takes to the fairway for its 17th year on, Monday May 18...
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Families across the country "tag the day" for CdLS

05/13/09
Benefit yard sales take place throughout the country Saturday, June 6, as part of the...
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Parents host 17th annual CdLS Charity Golf Tournament

05/04/09
The Cornelia de Lange Syndrome (CdLS) Charity Golf Tournament takes to the fairway for its 17th year on Monday, May 18...
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Teen named ambassador of Team CdLS

04/20/09
William Smisloff, a 17- year-old Ballston Spa resident born with Cornelia de Lange Syndrome (CdLS), has been named...
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Funding aids CdLS research, outreach

04/02/09
Cornelia de Lange Syndrome (CdLS) research and awareness efforts are both getting a boost from the federal government...

National CdLS Awareness Day marks 20 years

03/25/09
Even as the 20th anniversary of Cornelia de Lange Syndrome Awareness Day is celebrated on May 9, many people still ask,...

Eileen Ahearn joins CdLS Foundation Board of Directors

02/20/09
Eileen Ahearn, M.D., Ph.D., of Madison has joined the board of directors of the national Cornelia de Lange Syndrome (CdLS) Foundation...
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