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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March 2021

CdLS Clinic at St. Louis Children’s Hospital

March 10 @ 9:00 am - 3:30 pm

St. Louis Children’s Hospital in St. Louis, Missouri will host their third Cornelia de Lange Syndrome clinic. The specialties in attendance will include the following: ENT, Genetics, Neurology, Orthopedics, Physical Therapy, Occupational Therapy, Nutrition and Social Work. For more information contact Alisicia Jackson.

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Protected Tomorrows, Parent University: Recordkeeping 101: Finances, Taxes and Special Needs Trust

March 18 @ 8:00 pm

The key to financial success is keeping good financial records. With insurance, government benefits, investments, and taxes, this can become quite overwhelming. We will work together to identify ways for you to keep your records current, accurate, and complete.

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Transitioning to Adulthood: When the Dependent Child Reaches Adulthood

March 31 @ 8:00 pm - 9:00 pm

Parenting is a lifelong process, and it is particularly so for parents of children diagnosed with a serious illness, where the child’s chronological age may not correspond with their developmental age. New challenges emerge as a child grows older and bigger. Pediatric providers or facilities may raise concerns about the ability to continue caring for your child. Services available for your child may change based on the chronological age without regard to the continued needs. How do you navigate? Come…

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April 2021

Multidisciplinary Clinic for Adolescents and Adults

April 10 @ 8:00 am - 5:00 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. This year the clinic will be virtual. Presentations on the following topics from CdLS Clinical Advisory Board members: Behavioral Psychology, Child Psychiatry, Gastroenterology, Genetics, Gynecology, Neurology, Pediatric…

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Protected Tomorrows, Parent University: Important Things to Know About Guardianship

April 22 @ 8:00 pm

Guardianship is a legal process and used when a person can no longer make or communicate safe or sound decisions about his/her person and/or property. Before establishing a guardianship, you might consider other alternatives which we will discussed. What are the alternatives to guardianship? What individual rights are affected by a guardianship? What are the duties and responsibilities of guardianship? What are the benefits and downfalls to becoming my child’s guardian?

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May 2021

CdLS Awareness Day

May 8

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: Integrating Special Needs with Your Estate & Financial Plans

May 13 @ 8:00 pm

You spend so much time and effort creating the Future Life Care Plan for your family member with special needs.  Your estate and financial plans cannot be like everyone else’s.  You need to have special documents, very specific language with beneficiaries, special thought processes for your own retirement planning, specific tools to use that are not always widely known by professionals, extra special people and teams that will support your family member’s future and more.  We will work through a…

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June 2021

Protected Tomorrows, Parent University: Corporate Trustee 101: What They Are and Why They Are Important

June 17 @ 7:00 pm

A very important component of the Future Life Care Plan is the Special Needs Trust.  The careful selection of those who will make sure your goals for the Special Needs Trust implementation is key to the smooth transition and the future happiness and safety of your family member.   Making sure your Successor Trustees are qualified, caring, and able to fulfill their responsibilities will provide you peace of mind for the future.  We take a closer look at the best qualities…

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July 2021

Protected Tomorrows, Parent University: Ways to Support Siblings in Special Needs Families

July 15 @ 8:00 pm

Having a sibling with special needs is a reality many children are born into.  The advantages to having a sibling with special needs are numerous and include being more empathetic, more responsible and more resilient. However, these siblings also shoulder tremendous burdens that are not often or easily discussed.  We will talk about the role siblings play in day-to-day life and how to include, educate, and support them.

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August 2021

Protected Tomorrows, Parent University: Transition Programs & Schools – What is the Right Choice?

August 19 @ 8:00 pm

Finding the transition program that best meets the needs of your child with a disability is so important.  We will discuss the different types of programs, what type of program is best for your child, what types of community-based programs are out there, what programs will benefit your child, and how can you fund the programs your child attends.

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