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 2024

Rare Disease Day Viewing Party: UNSEEN

February 29 @ 7:00 pm - 8:30 pm

Join families, board members, and staff members on Rare Disease Day, February 29, 2024, for a viewing party. Many caregivers for children or adults who are disabled or medically complex are exhausted and isolated. The award-winning "UNSEEN" documentary gives an honest glimpse into caregivers' lives to enable change for millions. To watch the preview of UNSEEN click here. Register here!

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March 2024

Multi-Specialty Clinic for Children with CdLS

March 13

We are excited to share that there will be a clinic on March 13, 2024 at Shriners Children's Salt Lake City. The clinic is a wonderful opportunity to meet with mulitiple doctors with expertise in CdLS all in one day.

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Cornhole Tournament to benefit the CdLS Foundation

March 16

Join us for a fundraiser benefiting the CdLS Foundation for Zack Homan’s CBSL Project Prizes, Silent Auction, Dinner, and Drinks! Holy Ghost Hall 7960 Mill Station Rd Sebastopol, CA 95472

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Parent University: OUR TOOLBOX IS FULL!! WHAT TOOL DO I USE WHEN? IT’S SO CONFUSING!! HELP!!

March 21 @ 1:00 pm - 2:00 pm

We hear from so many families about how they are confused as to how to use many tools we now have for planning for our loved one. Some of the tools we have are: 3rd Party Special Needs Trusts, 1st Party Special Needs Trusts, SSI, SSDI, DAC, ABLE accounts, and work income. What tool to use when? Who to call? What to pay for? When to pay for it? What account to use? Who needs to know this? Parents, guardians,…

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April 2024

Adolescent and Adult Multidisciplinary Clinic

April 13 @ 8:30 am - 3:00 pm

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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Parent Unversity: WE ALL NEED A VACATION! IS IT POSSIBLE TO MAKE THAT HAPPEN? YES!

April 18 @ 1:00 pm - 2:00 pm

Let’s meet some service providers that assist in vacation planning when you have a family member with unique needs. We’ll hear from some families who had successful and amazing experiences. Now is a great time to start researching and finding out what will work for your family. Register now

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May 2024

Family Gathering – Virginia

May 4 @ 11:30 am - 3:30 pm

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

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Parent University: HOW TO INTRODUCE FUTURE GUARDIANS AND TRUSTEES INTO OUR FAMILY PROCESS – WHEN AND HOW?

May 9 @ 1:00 pm - 2:00 pm

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

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International CdLS Awareness Day

May 11

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

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2024 CdLS New England Golf Classic

May 20
Ipswich Country Club, 148 Country Club Way
Ipswich, MA 01938 United States

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!

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