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 Pediatric Genetics at the Harvey Institute for Human Genetics at GBMC, has led these free clinics since 2001. Any individual age 12 or older with CdLS can attend with their families. […]

A look at how the small steps you started out with this year are adding up to real progress in planning for your family’s future and to set your goals for the next year.

The key to a more secure fulfilling future is blending realism with hope. That takes knowledge, but also a willingness to learn about the many tools and techniques to help you get started.  We will work together to identify the goals you want to achieve and the dangers you will want to avoid, along with […]

Special Olympics Illinois in conjunction with IL ABLE and Protected Tomorrows will be hosting a webinar for families and providers entitled, "Stimulus Payment and More Q&A: Get Your IL ABLE, SSI Impact and Other ABLE Questions Answered" on Wednesday, February 10, 2021 from 12:00pm - 1:00pm CST. Protected Tomorrows and IL ABLE will be guest […]

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 […]

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 […]

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 […]

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!

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.