CdLS Foundation
  • WHAT IS CdLS?
    • Characteristics of CdLS
    • Diagnosis of CdLS
    • Frequently Asked Questions
    • Critical Care
    • Información en Español
    • Know your Genes
  • WHO WE ARE
    • Centers for Excellence
    • CdLS Heroes
    • Meet Our Team
    • Our History
  • WHO WE HELP
    • Families
    • Professionals
    • Research
  • GET INVOLVED
    • Raise Awareness
    • Calendar of Events
    • Special Events
    • Host a Fundraiser
    • Media Room
    • CdLS Blog
  • CONTACT US
  • DONATE
Select Page
10 events found.

Events

Events Search and Views Navigation

Event Views Navigation

  • List
  • Month
  • Day
Today
  • July 2024

  • Thu 18

    Parent University: LIFE SHOULD NOT BE ALL WORK AND NO PLAY – THE IMPORTANCE OF FRIENDS

    July 18, 2024 @ 1:00 pm - 2:00 pm

    Let’s talk with some social programs around the country and how to learn more about them. The value of friendships, and what does that mean for you and your child. […]

  • Wed 24

    Community Fun Run/walk

    July 24, 2024 @ 5:30 am - 7:00 pm

    For a Community Event to support Team CdLS athletes Sam, Kerry, and Dannielle in the Bank of America Chicago Marathon this fall. For more information, please contact Lisa Schroeder or […]

  • August 2024

  • Fri 9

    Courageous Parent Network: Grief Across the Caregiving Trajectory

    August 9, 2024 @ 8:00 am - 5:00 pm

    Grief is naturally a parent’s constant companion, from diagnosis – or lack thereof – onwards, including into bereavement. Psychologist Wendy Lichenthal, PhD is both a grief researcher and a clinician, […]

  • Thu 15

    Parent University: TRANSPORTATION – A BIG MISSING LINK TO SUCCESS

    August 15, 2024 @ 1:00 pm - 2:00 pm

    What are the options out there? Who will do the driving if you are not around? Are there any companies creating solutions to solve this need? Register now

  • Sat 17

    Bulls and Barrels Series

    August 17, 2024 @ 7:00 pm - 9:00 pm

    Saddle up and join us …… At Carters Arena in Chiefland, FL we have some rodeo fun while raising awareness and funds for the CdLS Foundation. The Carter family has […]

  • Thu 22

    Courageous Parent Network: Let’s Make Caregiving a Bit Easier Webinar

    August 22, 2024 @ 8:00 pm - 9:00 pm

    Finding resources and organizing information are two common struggles for many parents in our Network. But great news – CPN recently discovered two amazing tools that promise to make these […]

  • September 2024

  • Sun 8

    CdLS Awareness Dinner & Fundraiser Event

    September 8, 2024 @ 5:00 pm - 8:00 pm

    Please join us! CdLS Awareness Dinner & Fundraiser Event Honoring Kavin Mistry Meet Kavin, my remarkable cousin whose journey with Cornelia de Lange Syndrome has been one of resilience and […]

  • Thu 12

    Parent University: RETIRING FOR 3 – HOW TO HAVE ENOUGH FOR YOUR OWN RETIREMENT AND THEIRS, TOO

    September 12, 2024 @ 1:00 pm - 2:00 pm

    How much is enough for you, as the caregivers? How much is enough for your child? How to incorporate your child’s plan into your own. What is the most effective […]

  • Fri 13

    CdLS Foundation East Coast Regional Retreat

    September 13, 2024 - September 15, 2024
    Camp Saginaw 740 Saginaw Road, Oxford, PA, United States

    We're excited to announce the 2024 East Coast Regional Retreat.     Mark your calendars!   Guided by your input, the CdLS Foundation has reimaged what was the National conference into regional retreats. […]

  • Thu 19

    Courage Parent Network: This Shared Journey: Get to Know the Network

    September 19, 2024 @ 8:00 pm - 9:00 pm

    Come meet the faces BEHIND Courageous Parents Network, as well as some of the parents and providers IN the Network. (That includes you, btw.) Spend an hour with us talking […]

  • Previous Events
  • Today
  • Next Events
  • Google Calendar
  • iCalendar
  • Outlook 365
  • Outlook Live
  • Export .ics file
  • Export Outlook .ics file

Need Immediate Help or Support? Call us: 1.800.753.2357

About Us

  • Meet the Staff
  • Meet the Board
  • CdLS Experts
  • 990 & Annual Report
  • Blog

Resources

  • Webinars
  • Critical Care
  • CdLS Publications
  • Ask the Expert
  • Bereavement Services

Get Involved

  • Team CdLS
  • Attend a Family Gathering
  • Raise Awareness
  • Host a Fundraiser
  • Become a Volunteer

Support Us

  • Monthly Giving
  • Corporate Giving/Sponsorships
  • Matching Gifts
  • Planned Giving
  • CdLS Shop

CdLS Foundation

30 Tower Lane, Suite 400. Avon, Connecticut 06001 USA

2021. All rights Reserved. Terms & Conditions. Privacy Policy. EIN: 06-1057497

  • Facebook
  • X
Website Design by IMPACT

Children’s Hospital of Philadelphia

For families navigating a new or complex diagnosis of Cornelia de Lange Syndrome, the Children’s Hospital of Philadelphia (CHOP) is one of the places where trusted guidance and rigorous science come together. The Center for Cornelia de Lange Syndrome and Related Diagnoses at CHOP provides specialized multidisciplinary care, ensuring that clinical support and scientific understanding inform one another at every step.

The work done here has fundamentally changed what is known about CdLS. Research led by the CHOP team resulted in the identification of the first genes associated with the syndrome, NIPBL, SMC1A, and SMC3, discoveries that made molecular diagnosis possible and opened pathways for research that continues to shape care worldwide.

This is what it means when lived experience and science are not separate: the families who come through this clinic are connected to a body of knowledge being actively built on their behalf, and the researchers here are grounded in the realities those families navigate every day.

Greater Baltimore Medical Center

When families arrive at a CdLS diagnosis, one of the most important things they need is someone who has been here before and who knows the syndrome, understands what families face, and can help them find their footing. The CdLS clinic at Greater Baltimore Medical Center (GBMC) has been that place for families for more than two decades.

Dr. Antonie Kline established the clinic in 2000, recognizing that consistent, specialized care was essential for individuals with CdLS at every stage of life. What has emerged since is not just a clinical practice, but a body of knowledge, grounded in long-term relationships with patients and families, that continues to inform how CdLS is understood and managed.

Today, GBMC’s most promising research focuses on aging in CdLS, which is an area that reflects the Foundation’s commitment to lifespan-oriented care. For the families who come here, that means being part of something that not only responds to their needs today, but also builds understanding that will benefit those who follow.

Shriners Children’s Salt Lake City

No family navigating a CdLS diagnosis should have to navigate it alone or travel great distances to reach care from someone who truly understands the syndrome. The designation of Shriners Children’s Salt Lake City as a Center of Excellence is a direct expression of that commitment.

This center brings specialized, multidisciplinary CdLS care to families across the Mountain West, reducing the distance between a family’s daily reality and the clinical expertise they need. The Shriners team brings a strong, growing knowledge of CdLS, a commitment to collaboration, and a shared belief that the best care is built through ongoing connections with families, researchers, and clinicians across the broader network.

This is how the system grows: not just by deepening expertise at established centers, but by extending the reach of that expertise so that more families can be met where they are, in the moment they need it most.

Cohen Children’s Medical Center

Cohen Children’s Medical Center at Northwell Health is proud to be designated a CdLS Foundation Center of Excellence — one of a select group of institutions recognized for delivering the highest standard of clinical care and research for individuals with Cornelia de Lange Syndrome (CdLS) and their families.

Expert, Compassionate Care Close to Home

Our dedicated CdLS Multidisciplinary Clinic brings together specialists across Genetics, Gastroenterology, Child Development, Endocrinology, Neurology, and Physical Therapy — all under one roof. Families benefit from coordinated, comprehensive care supported by dedicated genetic counselors and administrative staff committed to a seamless experience.

World-Renowned Leadership

Our program is led by Dr. Ian Krantz, M.D., an internationally recognized authority on CdLS with over 20 years of experience building and leading the CdLS Center at Children’s Hospital of Philadelphia (CHOP). Dr. Krantz brings unparalleled clinical expertise and a deep commitment to this community to Northwell Health.

Advancing CdLS Research

Through the Feinstein Institutes for Medical Research, our team conducts original research focused on biomarker development and new therapeutic strategies for CdLS. We contribute to national registries, collaborative datasets, and biobanking efforts — including data and samples from approximately 2,000 individuals with CdLS gathered over decades of research. Our research is driven by one goal: better outcomes and quality of life for every individual with CdLS.

We welcome collaboration with clinicians and researchers. Contact us to discuss referrals, joint research initiatives, or data sharing opportunities.

Partnering with Families

We believe families are essential partners in care. We work closely with the CdLS Foundation’s Family Services team and are committed to providing resources, education, and support every step of the way.

University of California, Irvine

Understanding what causes CdLS at a molecular level is essential to everything that follows, from diagnosis to care to the possibility of treatment. The research team at UC Irvine has been central to building that understanding, and their work has changed what is possible for families affected by the syndrome.

In collaboration with researchers at CHOP, the team helped identify NIPBL, which is the gene responsible for the majority of CdLS cases. That discovery was not just a scientific milestone. It enabled molecular diagnosis, opened new research pathways, and set in motion a body of work that continues to inform how CdLS is understood across the scientific community.

The team has since developed mouse and zebrafish models of CdLS to explore how the syndrome affects development, including cardiovascular, structural, and neurological changes, and to test approaches that may one day help prevent or treat those effects. This is the kind of foundational science that connects lived experience to future possibility: work shaped by the realities families face and by the ways families are helping carry the work forward.

Stowers Institute for Medical Research

Hope in the context of CdLS is not passive. It is the result of people, researchers, families, and clinicians actively working to understand what is happening at a biological level and what might one day be made possible. The work at the Stowers Institute is a clear expression of that.

Investigator Jennifer Gerton, Ph.D., is pursuing research into the basic biological functions of the genes that, when mutated, cause CdLS. Her work is not speculative; it is contributing directly to a better understanding of the molecular basis of the syndrome and to the identification of pathways that could lead to meaningful therapeutic approaches.

What is being built here is the kind of foundational knowledge that treatments depend on. And because that work is connected to the Foundation’s broader network of families and clinicians, it is not happening in isolation. This work is happening in partnership with families, informed by their lived experience and centered on a future they are helping to shape.