May 2021
CdLS Awareness Day
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
Find out more »Protected Tomorrows, Parent University: Integrating Special Needs with Your Estate & Financial Plans
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…
Find out more »SFN Dads Virtual Conference
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,…
Find out more »CdLS Race to Tulsa
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…
Find out more »June 2021
California Virtual Family Gathering
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.
Find out more »Protected Tomorrows, Parent University: Corporate Trustee 101: What They Are and Why They Are Important
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…
Find out more »Hit the Trail for CdLS
Come and Celebrate with us! Join members of the CdLS Foundation Board of Directors and staff as we salute 40 years of supporting our families, while raising money and enjoying the beautiful and scenic Farmington Valley Greenway Rail Train in Avon, CT. You won't want to miss this very special 40th Kick Off event on June 25th! For more information, contact Annette Scheidecker at events@CdLSusa.org.
Find out more »Illinois Family Gathering
Hosted by Charyn Beaumont, Families can stay the whole time or just drop by if they would like. It will be located under the red and white striped tent at Heritage Park in Wheeling. The sign up genius created is where you can sign up to bring desserts/drinks/snacks. Deli/Sub sandwiches will be provided.
Find out more »July 2021
Protected Tomorrows, Parent University: Ways to Support Siblings in Special Needs Families
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.
Find out more »August 2021
Protected Tomorrows, Parent University: Transition Programs & Schools – What is the Right Choice?
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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