March 2024
Parent University: OUR TOOLBOX IS FULL!! WHAT TOOL DO I USE WHEN? IT’S SO CONFUSING!! HELP!!
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,…
Find out more »April 2024
Adolescent and Adult Multidisciplinary Clinic
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…
Find out more »Parent Unversity: WE ALL NEED A VACATION! IS IT POSSIBLE TO MAKE THAT HAPPEN? YES!
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
Find out more »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 »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 »July 2024
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
Find out more »August 2024
Parent University: TRANSPORTATION – A BIG MISSING LINK TO SUCCESS
What are the options out there? Who will do the driving if you are not around? Are there any companies creating solutions to solve this need? Register now
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