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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March 2022

Protected Tomorrows, Parent University: Siblings & Caregivers: What They Might Want to Ask & What We Need to Tell Them

March 19 @ 12:00 pm

In this class, we will discuss how to prepare siblings and future caregivers so that they feel comfortable taking over the role. Let’s bring up the tough topics. We as parents want confidence that our plan will work as Future Caregivers who will take on this very important role. The hard questions will be addressed. We will get the advice from those who have stepped into the role to give us their input as well.

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Protected Tomorrows, Parent University: – Finance, Taxes, & Special Needs – Making It All Work in The End

March 24 @ 1:00 pm

We understand that often we as parents put our children first. It’s natural. But we need to make sure we are financially secure as well, because without us, our children just might not be ok. We will talk about how your financial planning needs to be different, how to coordinate the Special Needs Trust and the ABLE Account into it, and how you integrate tax planning into your overall plan. There are so many taxes to consider, including income taxes,…

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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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Protected Tomorrows, Parent University: – Benefits: What You Need to Know & Get Clarity about the Often-Asked Questions

April 21 @ 12:00 pm

We will discuss SSI, SSDI, DAC, Medicare, and Medicaid. We will talk about confusing topics like A.) Charging your child rent versus using the fair share formula. B.) Why do I hear you always get turned down the first time you apply for SSI? Is it true? C.) Do we really need to plan differently as to how we as parents plan to take our own Social Security?

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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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Protected Tomorrows, Parent University – Siblings & Caregivers: What They Might Want to Ask & What We Need to Tell Them

May 19 @ 12:00 pm

In this class, we will discuss how to prepare siblings and future caregivers so that they feel comfortable taking over the role. Let’s bring up the tough topics. We as parents want confidence that our plan will work as Future Caregivers who will take on this very important role. The hard questions will be addressed. We will get the advice from those who have stepped into the role to give us their input as well.

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2022 New England Golf Classic

May 23
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 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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