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

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 @ 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…

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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…

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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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SFN Dads Virtual Conference

May 15 @ 8:30 am - 2:00 pm

The SFN Dads Virtual Conference is for dads raising children with special needs, interested in:     - developing their fathering skills - gathering resources for their child and family, and - meeting and networking with like- minded dads Some of the guest speakers will include: Mary Anne Ehlert, David Hirsch, Joe Mantegna, Wayne Messmer, and Rob Johnson. Some agenda topics will include: Being Emotionally Present, Housing & Residential Issues, Sibling & Family Balance, Respite & Marriage, Grieving the Anticipated Life,…

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CdLS Race to Tulsa

May 16

Join the Local Planning Committee for a virtual race benefiting CdLS. Cornelia de Lange Syndrome or CdLS is a rare genetic syndrome that causes a broad range of physical, cognitive, and medical challenges for the diagnosed individual. Every two years the CdLS Foundation hosts a Family Conference where individuals with CdLS and their families from around the world can attend to learn about CdLS, how to care for individuals with CdLS, seek medical advice with multiple specialists, and bond with…

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June 2021

California Virtual Family Gathering

June 5 @ 2:00 pm - 4:00 pm

Please join us for a California Virtual Family Gathering. Hosted by the CdLS Foundation Family Service and RCs Karen Prada, Melissa Staggs, Susan Drexler and Dena Davis. Send a photo via email if you would like your child/family in the slide show. Saturday, June 5th, 11 a.m. - 1 p.m. PST. This gathering will be held via Zoom. RSVP to Alisicia Jackson at families@CdLSusa.org.

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