March 2020
CdLS Clinic at Shriner’s Hospital
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…
Find out more »2020 United Airlines NYC Half
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…
Find out more »April 2020
COVID-19 and Individuals with CdLS Webinar
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…
Find out more »May 2020
2020 TD Five Boro Bike Tour
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…
Find out more »June 2020
Parent University: Taking Control of the Legal Mumbo Jumbo
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…
Find out more »Ninth Biennial CdLS Scientific & Educational Symposium
This event has been POSTPONED. More details to come.
Find out more »CdLS National Family Conference
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!
Find out more »2020 CdLS Foundation Virtual Conference
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…
Find out more »August 2020
Parent University: The Recipe for Financial Success
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,…
Find out more »September 2020
Parent University: Your Child Is Aging Out … What Now?
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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