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.

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.

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.

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,…

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…

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?

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

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.