We have worked all year to take next steps. But it is easy to get caught in THE GAP. Sometimes, when we are working toward a big goal, we only see all that is still in front of us. Let’s turn around and review the whole year and see how far you have come in […]
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 – […]
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 […]
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 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 […]
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 […]
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 […]
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. […]
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. […]
