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.

Loading Events

Past Events

Events Search and Views Navigation

Find Events

Event Views Navigation

Events Search

February 2021

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. Visit the Lights of Love Facebook page

Find out more »

Protected Tomorrows, Parent University: How to Fund Now for Peace of Mind Later

February 18 @ 8:00 pm

We will work through the vision of what you would hope to achieve for the future, the basic information you will need to gather now to be ready to take the next steps, and the details that are so important for your future plan. We will discuss information about retirement planning, the ABLE account, and tying together government benefits, insurance and investments.

Find out more »

Choosing Resiliency in the Face of Adversity

February 22 @ 7:00 pm

How do we process an unexpected, life-altering event or circumstance? How do our choices and decisions have bearing on the outcome? Join CPN’s Blyth Taylor Lord and Facebook COO Sheryl Sandberg for a candid discussion of how these experiences shape us, and how to move forward with maximum healing and minimal regret. This event is hosted by National Tay-Sachs and Allied Diseases as part of their Family Connection Webinar Series. REGISTER for Choosing Resiliency

Find out more »

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. There are so many different ways to get involved on Rare Disease Day!

Find out more »

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.

Find out more »

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.

Find out more »

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…

Find out more »

April 2021

Multidisciplinary Clinic for Adolescents and Adults

April 10 @ 10:00 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…

Find out more »

Transitioning to Adult Care

April 21 @ 2:00 pm - 3:00 pm

As rare disease patients approach adulthood, they face the transition from parent-supervised pediatric care to more independent adult models whereby they take ownership of their care. This change can seem daunting for patients and parents, especially when dealing with rare disorders that involve multiple specialists that may be part of a care team. Join us to learn how to plan for this change and to hear from a mother and son, who will share their experiences transitioning from pediatric to…

Find out more »

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?

Find out more »