May 2024
Family Gathering – Virginia
Hosted by Emily Munoz, mom to Damien and Paula Messer, mom to William Saturday May 4th, 2024 11:30am - 3:30pm Lambert’s Point Community Center 1251 W. 42nd St. Norfolk, VA 23508 Main dish will be provided by hosts. Families are asked to bring a side dish, snacks or drinks. Register here
Find out more »Parent University: HOW TO INTRODUCE FUTURE GUARDIANS AND TRUSTEES INTO OUR FAMILY PROCESS – WHEN AND HOW?
Family/Sibling communications. What they should know. What do they think they know and don’t know? If utilizing Corporate Guardians and Trustees, when to start to bring them into your process? How to find peace of mind about the future. Register now
Find out more »International CdLS Awareness Day
International 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
Find out more »Let’s Talk About CdLS 5th Annual Parade
Join Sara, the sister of Samira, for the Let's Talk About CdLS 5th Annual Parade. Saturday, May 11, 2024 11:00 a.m. – 3:00 p.m. Central Falls High School 24 Summer Street Central Falls, RI
Find out more »CdLS Awareness Day Event in Fairmont, MN
Join families in Fairmont, MN, for an International Awareness Day Event! Hosted by the Fausch family! Lunch will be served.
Find out more »2024 CdLS New England Golf Classic
Plans are underway for a fantastic golf fundraiser at Ipswich Country Club for the 31st Annual New England Golf Classic to be held on Monday, MAY 20, 2024! This popular event 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 camaraderie!
Find out more »June 2024
Parent University: FATHER’S DAY MONTH AT ITS BEST – DADS, DADS, AND MORE DADS! THE IMPORTANT ROLE OF DAD IN THE PLANNING FOR THE FUTURE
Our guests from the Special Dads Network talk about their experiences. How can DADs help identify EMPLOYMENT opportunities for their child? How might the Special Dads Network help? Register now
Find out more »The Purple Pickle
Mixed Doubles Pickleball Tournament Celebrating people with Cornelia de Lange Syndrome and disabilities. Tournament Details June 15 | 9 AM to 12 PM The Painted Pickle 976 Brady Ave NW, Atlanta, GA 30318 Teams will advance through double elimination with teams playing one 15-point game per round. Losing once moves you to a secondary bracket, maintaining a chance for redemption. Each team will be guaranteed to play twice. Only mixed doubles teams are invited to compete. All skill levels are…
Find out more »July 2024
Nebraska Family Gathering
Hosted by Michelle Reed, mother of Beth Ann and Christy Courtney Whetstone, mother of Bailey Aldersgate United Methodist Church, 8320 South Street, Lincoln NE We will be in the Sunshine Room and our lunch will be catered in by HyVee.
Find out more »Parent University: LIFE SHOULD NOT BE ALL WORK AND NO PLAY – THE IMPORTANCE OF FRIENDS
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. Build your own network or find one to fit into. Register now
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