Calendar of Events

Whether you're looking for the next family gathering, a golf tournament, or just want to see what's going on in your region, the calendar of events has all the what, when and where you need.

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March 2020

CdLS Clinic at Shriner’s Hospital

March 11 @ 8:00 am - 12:00 pm

Shriners Hospital for Children-Salt Lake City, Utah will have their annual Cornelia de Lange Syndrome Clinic March 11, 2020 from 8 am - 12 pm with a range of specialists available just for children with CdLS (new patients must be age 18 and younger). The specialties will include the following: pediatric orthopeadics, eyes ears nose and throat, gastrointestinal, pediatrics, neurology, genetics, the orthotics and prosthetic lab, and physical and occupational therapy services. Shriners Hospital for Children-Salt Lake City has been…

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2020 United Airlines NYC Half

March 15
New York City

Many runners say that running has changed their lives. Team CdLS runners say that they have changed the lives of others. Kick off the running season with the Cornelia de Lange Syndrome (CdLS) Foundation at the United Airlines NYC Half Marathon Sunday, March 15, 2020 The CdLS Foundation will be there with you every step of the way, providing you with: • Guaranteed race entry • An official Team CdLS singlet • Team CdLS Swag Bag • Pre-Race Luncheon • Weekly…

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April 2020

COVID-19 and Individuals with CdLS Webinar

April 21 @ 3:30 pm - 4:00 pm

For 39 years, the CdLS Foundation has been focused on improving the health and well-being of individuals living with CdLS and their families. Now, as the CdLS community confronts the COVID-19 pandemic, you are invited to join the Foundation and Drs. Antonie Kline and Soma Jyonouchi for a 30-minute webinar to hear how it affects individuals with CdLS and learn of resources that can help during this public health crisis. Register Here - - - Dr. Kline joined the CdLS…

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May 2020

2020 TD Five Boro Bike Tour

May 3
New York City

Many bicyclists say that biking has changed their lives. Team CdLS bicyclists say that they have changed the lives of others. Join the Cornelia de Lange Syndrome (CdLS) Foundation at the TD Five Boro Bike Tour Sunday, May 3, 2020 The CdLS Foundation will be there with you every step of the way, providing you with: • Guaranteed entry and placement in the first Start Wave • An official Team CdLS singlet • Pre-Race Luncheon • VIP Access to the Finish…

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June 2020

Parent University: Taking Control of the Legal Mumbo Jumbo

June 18 @ 8:00 pm - 9:00 pm

Putting together legal documents is confusing. Legal “talk” sometimes intimidates us. But the real concepts are simple, and knowing what the legal “talk” means, how it applies to you and your family, and what you really need, is so important to the big picture of the future. Sometimes we need help. The level of help we need it often defined by the kinds of help we need. In this part of the session, let’s discuss all of the option that…

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Ninth Biennial CdLS Scientific & Educational Symposium

June 24 - June 25
Marriott Tulsa Hotel, Southern Hills Tulsa, OK United States + Google Map
CdLS Foundation Scientific Symposium

This event has been POSTPONED. More details to come.

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CdLS National Family Conference

June 25 - June 28
Marriott Tulsa Hotel, Southern Hills Tulsa, OK United States

This event has been CANCELED. We are excited to announce important information regarding the 2022 CdLS Foundation National Family Conference! The Conference will be held in Tulsa, OK from June 23-26. Be sure to check out all of our information to get your fundraising plans going! 

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2020 CdLS Foundation Virtual Conference

June 25 @ 12:00 pm - June 26 @ 4:00 pm

Join worldwide CLS experts for a two-day virtual conference. Speakers will discuss topics ranging from behavior, gastrointestinal (GI) challenges, gene changes and a medical panel featuring the United States Medical Director, Antonie Kline, MD. Viewers can choose to attend one or both days. One-day attendance is $25, and two-day attendance is $40. Registration opens on May 29 and closes on June 22. This Conference is a great learning opportunity for families; caregivers; medical, educational and therapeutic professionals; and researchers wanting…

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August 2020

Parent University: The Recipe for Financial Success

August 20 @ 8:00 pm - 9:00 pm

There are a myriad of insurance plans to understand. Health insurance, life insurance, disability insurance, long term care insurance – what to use, when? What makes sense? The ABLE account rules are so confusing, and you don’t want to make a mistake. We will review the basics of the ABLE account and how to select the right plan for you. How do we tie these accounts into the rest of our financial plan? Now that you have all the ingredients,…

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September 2020

Parent University: Your Child Is Aging Out … What Now?

September 17 @ 8:00 pm - 9:00 pm

Once your child is 22, they will start receiving social security. Now what? Where will your child live? Where will they work? Navigating the transition period can be overwhelming but also exciting. It’s not just about the place, it’s about the right home, continuing education, job opportunities, recreation, and the rest that makes life safe and fulfilling.

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