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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February 2022

CdLS Remembrance Day

February 12

Losing a loved one with CdLS at any age can be life-altering. Parents, siblings, relatives and friends feel tremendous loss and many times have a difficult time understanding why. It is so important that we as a community surround them with support and unconditional love. Although they have lost their child, grandchild or sibling – they still belong and will forever be part of our journey. On February 12th, we will be celebrating CdLS Remembrance Day. We ask that our…

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Lights of Love for our CdLS Angels

February 12

February 12th is CdLS Remembrance Day, we ask everyone, everywhere, to light a candle in remembrance of each and every one of our loved ones who are no longer with us. Sadly, more of individuals with CdLS have gained their wings in the past year, and we want to use this worldwide event to recognize and honor them.

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Rare Disease Day

February 28

Rare Disease Day® takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. For more information, contact Gabrielle Nadeau.

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April 2022

Multidisciplinary Clinic for Adolescents and Adults

April 2

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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May 2022

National CdLS Awareness Day

May 14

CdLS Awareness Day is observed each year in order to shed light on this often misdiagnosed, little-known genetic syndrome. Parents, volunteers and others request official Awareness Day proclamations from governors and local leaders; hang awareness flyers in public places; make presentations to civic groups or health workers; write to their local newspapers; and much more. For more information contact Gabrielle Nadeau

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2022 New England Golf Classic

May 23

Plans are underway for a fantastic golf fundraiser at Ipswich Country Club for the 29th Annual New England Golf Classic to be held on Monday, MAY 23, 2022! That's right this popular event has been moved back to it's original season and will be played in Spring. So be sure to make this your first golf outing of the year, and be ready for a great day of golf and camraderie! Learn more

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June 2022

2nd Annual Hit the Trails in Avon, CT

June 11

Find out how to start your peer-to-peer fundraising and join CdLS Foundation families, staff and volunteers as we walk, run or bike an easy stint along one of the scenic Rail Trails in New England on the Farmington Valley Greenway Trail.

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October 2022

2022 Bank of America Chicago Marathon

October 9
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 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

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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