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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August 2022

Protected Tomorrows, Parent University – What are the Alternatives Best Suited for Your Child’s Success After They Leave Transition Programs?

August 11, 2022 @ 12:00 pm

Why is transitioning each child so different? In this class, we will discuss what happens when the bus stops coming. We will talk about day programming, special recreation services, job counseling, job coaching, and turning your child’s interest into a business opportunity.

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September 2022

Protected Tomorrows, Parent University – What Are the Options, What Is the Best Fit, & How to Fund Them

September 22, 2022 @ 12:00 pm

In this class, we will explain in detail, current residential options: living with your parents, Section 8 housing, CILAS, group/supportive housing, skilled nursing facilities, and Special Needs Trust ownerships/paying rent. We will talk about determining the best fit for your child and how to fund the different options.

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October 2022

2022 Bank of America Chicago Marathon

October 9, 2022
Chicago, IL

Many runners say that running has changed their lives. Team CdLS runners say that they have changed the lives of others. Join the Cornelia de Lange Syndrome (CdLS) Foundation at the world-renowned Bank of America Chicago Marathon Sunday, October 9, 2022, AND Agree to collect a minimum of no less than $1,250 (USD) if the entry is claimed during the application window (Tuesday, October 19, 2021 to Tuesday, November 30, 2021 at 2 pm) and $1,750 (USD) if the entry is…

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Amber Gaines Memorial Golf Classic

October 10, 2022

2022 Amber Gaines Memorial Golf Classic - Monday, October 10 This long standing Missouri golf outing is one of the CdLS Foundation's largest fundraisers. MCWP & PLM's 33rd Annual Amber Gaines Memorial Golf Classic is slated for Monday, October 10th at the Tapawingo National Golf Club. Participants will enjoy 18 holes of golf, brunch, dinner, and an opportunity to win both skill and door prizes.

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2022 Baltimore Running Festival

October 15, 2022

Join Team CdLS runners at the Baltimore Running Festival on Saturday, October 15, 2022. Here is a chance to run through the scenic Inner Harbor waterfront area, historic Federal Hill and charming Fells Point; all to raise money for children and adults with Cornelia de Lange Syndrome (CdLS). Not sure you can handle the full 26.2 mile marathon? That's okay! There are different distances for a variety of skill levels. Walk the 5K, jog the 10k, stroll the half marathon…

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Protected Tomorrows, Parent University – Spooky Scenarios

October 20, 2022 @ 12:00 pm

What do we hear that scares families the most. We will be tracking the toughest questions from all classes, as well surveys done during the year. Come prepared with your questions. We are going to tackle the tough ones!

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New England Family Gathering

October 22, 2022 @ 12:00 pm - 4:00 pm

Everyone is welcome! Come and enjoy an afternoon of connecting, learning and fun for the whole family! Enjoy pony rides by Pony Town Parties, pumpkin decorating, and outdoor games. Fragile Footprints, a local family support organization, will host fun activities and games for siblings during the event. To learn more about this event and how to RSVP contact Deirdre Summa.

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Multidisciplinary Clinic for Adolescents and Adults

October 29, 2022

This Foundation-managed, free clinic occurs twice yearly at Greater Baltimore Medical Center (GBMC) in Baltimore, MD. Foundation Medical Director Antonie Kline, M.D., Director of Clinical Genetics at the Harvey Institute for Human Genetics at GBMC, has led these clinics since 2001. Any individual age 12 or older with CdLS can attend with their families. Presentations on the following topics from CdLS Clinical Advisory Board members: Behavioral Psychology, Child Psychiatry, Gastroenterology, Genetics, Gynecology, Neurology, Pediatric Ophthalmology, Speech Pathology. Live Q&A with…

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November 2022

2022 TCS NYC Marathon

November 6, 2022
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Protected Tomorrows, Parent University – Year End Wrap Up & Q&A

November 17, 2022 @ 12:00 pm

Congratulations! We have worked all year to take the next steps. But it is easy to get caught in THE GAP. Sometimes when we are working toward a big goal, we only see all that is still in front of us. Let’s turn around and review the whole year and see how far you have come in your planning and let’s close THE GAP. You will then see the real progress you have made for your family’s future. Then you…

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