Our History

Since 1981, the CdLS Foundation has opened its doors to individuals with CdLS and their family members.

Each year the community grows by the hundreds as research, treatment and understanding of CdLS advance. Since its inception, the Foundation has been working to fulfill its slogan of reaching out, providing help and giving hope to anyone touched by this little-known genetic syndrome or other isolating conditions. Much has been achieved since the first Family Gathering, but there is more to do.

Thank you to our founding families for wanting more for your children. Without you, none of this would be here.

  • 1933

    CdLS is identified by Dr. Cornelia de Lange.

    Dutch physician Dr. Cornelia de Lange identifies two children with...
  • 1977

    Reaching Out is sent out for the first time.

    Sue Anthony and Carol Welsh publish an informal, hand-typed family...
  • 1979

    A directory featuring 23 children with CdLS is printed

    There are now over 3,100 individuals with CdLS that are...
  • 1980

    The first gathering of CdLS families takes place in Maryland

    Sue Anthony writes a letter to Exceptional Parent magazine, announcing...
  • 1981

    The CdLS Foundation is incorporated and achieves non-profit status.

    The office and its one paid staff person are based...
  • 1983

    Dr. Jackson becomes first Medical Director

    In 1983, Dr. Jackson becomes the first Medical Director of...
  • 1985

    The first CdLS conference is held in Indianapolis.

    They were originally called “CdLS conventions” and were moved inside...
  • 1989

    The first CdLS Awareness Day is observed.

    Foundation staff organized an international “yard sale” to kick-off a...
  • 1991

    A CdLS Scientific Advisory Board (SAC) is established.

    A CdLS Scientific Advisory Board (SAC) is established.  The SAC...
  • 1992

    Dr. Antonie Kline develops the first CdLS growth and development charts.

    Children with CdLS are often short and below average in...
  • 1996

    The CdLS Foundation launches its first website.

    The website has gone through a few redesigns since its...
  • 1997

    The Awareness Coordinator program begins.

    Volunteers are charged with raising awareness of CdLS in their...
  • 1998

    The “Ask the Doctor” feature is added to the CdLS website.

    Which has been renamed “Ask the Expert” to reflect the...
  • 1999

    A second Family Service Coordinator is added to staff.

    In 1991, the first paid staff member was hired.  Our caring and knowledgeable...
  • 2001

    Dr. Kline becomes the Foundation’s Medical Director.

    Dr. Kline became involved with CdLS while attending Jefferson Medical...
  • 2003

    CAB is created.

    A CdLS Clinical Advisory Board (CAB) is established in the...
  • 2004

    The first CdLS gene is discovered.

    Dr. Ian Krantz of the Children’s Hospital of Philadelphia (CHOP)...
  • 2006

    The second CdLS gene is discovered.

    An Italian team of researchers identifies a second genetic mutation...
  • 2007

    The third CdLS gene is discovered.

    A third gene is discovered by researchers at CHOP, specifically...
  • 2008

    The CdLS Centers for Excellence program is created.

    This program recognizes excellence and outstanding achievement in research and/or...
  • 2010

    Make it a million.

    For the first time ever, the Foundation surpasses $1 million...
  • 2012

    The fourth CdLS gene is discovered.

    HDAC8, the fourth “CdLS gene,” is identified.  Individuals with mutations...
  • 2012

    New England Golf celebrates 20 years.

    Inspired by their children affected by CdLS, New England parents...
  • 2013

    The fifth CdLS gene is discovered.

    Scientists discover that changes in the gene RAD21 causes features...
  • 2014

    A new logo is a launched.

    Which replaces the “CdLS cube” that has been in use...
  • 2016

    Shriner’s Clinic is created.

    The first CdLS Clinic at Shriner’s Hospital in Salt Lake...
  • 2017

    The sixth CdLS is discovered.

    ANKRD11 the sixth “CdLS gene” is discovered.  KBG syndrome is...
  • 2017

    Missouri Golf celebrates 30 years.

    Each year, committee members, which include Madison County Wood Products’ (MCWP) Jim Kesting, Jim...
  • 2017

    St. Louis Clinic is created.

    The first CdLS Clinic at St. Louis Children’s Hospital is...
  • 2018

    The seventh CdLS gene is discovered.

    BRD4 is the seventh “CdLS gene” that is discovered.  The...
  • 2018

    Team CdLS breaks records.

    Team CdLS Bank of America Chicago Marathon runners celebrate a...
  • 2018

    International Treatment Protocols are released.

    “Due to the great variability of the CdLS spectrum, as...
  • 2019

    PBS segment premieres.

    The PBS segment called “Spotlight On” which highlights CdLS premieres...
  • 2020

    COVID-19 takes over the world.

    Due to the global pandemic, the CdLS Foundation found itself...
  • 2021

    The CdLS Foundation turns 40.

    The CdLS Foundation celebrates 40 years of serving the CdLS...

40th Anniversary Video

With the will and determination of a few parents a Foundation was created. They found a dedicated Medical Director who taught other medical experts about CdLS. They hired strong staff who understood the value and promise of helping current and future generations. They also turned to dedicated volunteers who were connected to someone living with CdLS. Listen to their stories and how this anniversary is important to them. Hear from founding parents, Julie and Frank Mairano; former Family Service Coordinator, Lynn Audette; volunteer extraordinaire, Norm Winnerman; and Medical Director, Dr. Tonie Kline.

Our daughter, Maddy, was diagnosed with CdLS in 1991. It took my husband and me a few weeks to finally reach out to the Foundation, hoping that it was a mistake. When we did connect, so many moms contacted me and I felt hopeful again. When Maddy passed away, the Foundation was there again – providing moral support and help as we hosted a fundraiser in her honor. The CdLS Foundation has been a great support for all of us, for Maddy’s siblings too, all along the journey.”

Lynne Kerr, Mother to Maddy

Clinical Advisory Board (CAB) Member, Former Board Member

Forty for Forty

The CdLS Foundation is celebrating 40 years. Since opening its doors, the Foundation has surpassed the founding families’ wildest dreams, and provides services to thousands of parents and families around the world. Although new goals have come into focus, the CdLS Foundation has always reflected the original mission of the founding mothers: personal support is our highest priority. In celebration of our 40th anniversary, we are asking you to give $40 in honor of your loved one with CdLS. It is your chance to help us continue the tradition and be a part of something big!

Calendar of Events

Events are an important and effective way to raise awareness of CdLS and to support the Foundation. There are a variety of events happening throughout the year that we hope you take advantage of. Be sure to check the events calendar to see the latest updates on what events and celebrations are happening in conjunction with the Foundation’s 40th anniversary. Interested in holding an event to celebrate this milestone? Contact Annette Scheidecker, Development Director, at events@CdLSusa.org or 860.676.8166.