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For parents, caregivers, health care providers, and teachers, concerns and questions often arise regarding the care and well-being of individuals with CdLS.
Drs. Grados and Srivastava wrote an article “Pharmacotherapy in CdLS”. It discusses behavior, individuals with CdLS and the use of certain medications.
Join us at the Ipswich Country Club in Massachusetts on Monday, September 27, 2021 as we golf and dine together to raise funds for children and adults with CdLS.
It takes a lot of preparation to create a seamless transition. These tips from VeryWell Family can help you prepare for the coming school year.
In the second issue of The Path Forward, we dove into the topic of Living Arrangements. Take a moment to share your thoughts on the Path Forward.
Celebrate 40 years! Learn about the milestones of the CdLS community, how we have all grown and surpassed the pioneer families’ wildest dreams.
Join local IL families for the biennial family gathering. All families (and extended families) are welcome to stay for the whole three hours or just drop in when you can.
Can’t make it to a participating Walgreens store, but would still like to donate to this event? Please do so by clicking the donate button below.
Learn about all of the research opportunities available for you and your loved one with CdLS. Opportunities are changing all the time!
Check out all the amazing photos from this year’s Awareness Day. Thank you to everyone who sent in a photo or shared them on social media. You all are rock stars!
Watch the amazing documentary that follows Dillon and his parents as they do what they can to give their son a fulfilling life. Produced and directed by Gabrielle Connelly.
Register for the Special Fathers Network (SFN) Dads Virtual Conference being held on Saturday, May 15. This conference is for dads raising children with special needs.
Join staff and Board Members to celebrate the Foundation’s 40th anniversary. Create a virtual and join us for a walk on the Farmington Valley Greenway Trail.
Celebrate the Foundation’s 40th anniversary and help individuals with CdLS. Create a virtual fundraiser and walk, bike, run in a location near you.
Want to do a Yard Sale to benefit the Foundation? Get your neighbors and relatives to donate items to your sale, or organize a neighborhood sale!
Learn how to plan for adult transition and hear from a moth and son, who will share their experiences transitioning from pediatric to adult care.
Don’t forget to purchase your #CdLSAwarenessDay2021 t-shirts! Time is running out! April 14th is the last day to order. A fun way to raise awareness.
Register for a free webinar hosted by Courageous Parents Network. “Transitioning to Adulthood: When the Dependent Child Reaches Adulthood” on March 31st at 8:00 pm EST.
Our 2021 Awareness Day t-shirts are here! Help raise awareness for CdLS in your community. Campaign ends 4/17 –don’t wait purchase your shirts today!
Looking for ideas for Awareness Day? Here is one! Snap a selfie with this downloadable template and post on social media! Be sure to tag the Foundation.
Integrative Touch for Kids (ITK) is offering $67,500 in scholarships to frontline healthcare providers and parents who have kids with special medical needs.
Today is Rare Disease Day. Everyone has their own unique stripes. There are currently over 7,000 identified rare diseases and CdLS is one of them.
Courageous Parent Network presents “The Couple Relationship Matters, too! ”. Nancy Frumer Styron will offer insights as you care for your child and your family.
Courageous Parent Network presents “Choosing Resiliency in the Face of Adversity”. We are excited to present this virtual event, they hope you join them.
Learn about our Multidisciplinary clinic for adolescents and adults for ages 12 and older; which has been scheduled for April 10th. This event will be virtual.
NORD has created wonderful downloadable resources to help you reach out to your local media. Please feel free to use these resources and to share them.
Download the branded CdLS Foundation zoom backgrounds today. Take a moment to talk about CdLS with your co-workers, fellow students or friends.
The CdLS Foundation is pleased and proud to announce the election of five new outstanding members to its prestigious Board of Directors.
Please take a moment to read our statement regarding CdLS and the two vaccines. If you have questions, please do not hesitate email familysupport@CdLSusa.org.
Start 2021 off right and run the One Love One Heart virtual 5K. Proceeds will benefit the CdLS Foundation. 5K runs from January 8th – 10th.
With your generous support, you can become a part of something bigger than yourself, and you enable us to continue to reach out, provide help and give hope.
We need your help on GivingTuesday! Your help will ensure that the CdLS Foundation can remain a beacon of hope for thousands of families.
Are you a father of a child with CdLS, you are invited to participate in a research study that is being conducted by the University of Maryland School of Medicine.
Visit our new Adult Transition pages to learn about the 6 core areas of transition. Gain insight from caregivers who have already gone through the process.
Purchase Jumpy Monkey coffee to support the Local Planning Committee prepare for the 2022 National Conference. Choose between 5 different flavors.
Purchase a CdLS tumbler to help the Local Planning Committee plan for the 2022 Conference. There are several different colors and images to choose from.
To help us enhance our grief support services, we ask you to take a few moments to participate in this survey and share your honest feedback.
Back by popular demand is our CdLS Foundation face masks! This time with a white background and a full color logo. Help support the Foundation and raise awareness!
You are invited to take part in a research study being conducted at Cincinnati Children’s Hospital Medical Center (CCHMC) for individuals diagnosed with CdLS.
We have partnered with Lisa Leonard Designs to create a one-of-a-kind design that captures the heart and soul of the CdLS community.
We’ve created branded face masks for the safety and protection for all our community members. Help support the Foundation and raise awareness!
Today is the last day to register for the 2020 CdLS Foundation Virtual Conference. When the clock strikes midnight registration will be closed. Don’t miss this chance!
Don’t miss the chance to learn for world renowned experts in CdLS. Register for the 2020 CdLS Foundation Virtual Conference before it is too late.
Meet the speakers presenting day two of the 2020 CdLS Foundation Virtual Conference. Learn all about GI and blenderized diet. Register today!
Meet our speakers who are presenting on day one of Conference. Hear from experts in behavior, medical updates and a parent expert.
Win fun prizes, see images from families across the world and listen to music from Miller Holler …. all while enjoying your favorite ice cream.
At the end of each workshop there will be a live question & answer portion? Join us for the 2020 Virtual Conference to get your questions answered in real time.
Learn about the different ways someone can get diagnosed with CdLS. Currently, researchers find a gene change in about 75 percent of individuals with CdLS.
Registration is open for the 2020 CdLS Foundation Virtual Conference. Join leading experts to learn about topics that affect the life of individuals with CdLS.
Download the CdLS Foundation coloring sheet and word search; these two activities can be found under the education module. Enjoy with loved ones.
From May 1-15, Upstream Arts will facilitate free weekly classes for the CdLS Community. Classes are Fridays from 10-11 am (CT). Register today!
Join Drs. Kline and Jyonouchi for a webinar to hear how COVID-19 affects individuals with CdLS and learn about helpful resources.
NORD is hosting a free 30-minute webinar on how people with rare diseases are being affected by the pandemic and for an quick update on NORD initiatives and resources.
Protected Tomorrows will continue to provide their FREE Parent University webinars. These are great offerings toward the path of transition for individuals with CdLS!
Don’t wait purchase your 2020 CdLS Awareness t-shirt today. Support your loved one and raise awareness about CdLS. Last day to buy your shirts is April 12th!
We have compiled a list from our CdLS experts on in-home therapies that you can do with your loved ones to ensure that they are still working on their well-being..
Submit your questions or concerns regarding COVID-19 and your loved one through our Ask the Experts portal and someone will get back to you as soon as they can.
Purchase your 2020 CdLS Awareness t-shirt today. Support your loved one and raise awareness about CdLS. Together we can make sure hope starts here.
Having your loved ones home with you for the past few weeks can be stressful. We put together a list of ways to relax and unwind to help keep your strength.
NORD (National Organization for Rare Disorders) is hosting a FREE webinar on 3/31 for anyone who would like to learn strategies for coping, staying healthy and reducing anxiety.
In light of the growing public health concern around COVID-19 and the global potential for public transmission, we have a responsibility to the CdLS …
2020 National Family Conference Registration is Open! Register today! Early Bird pricing is available until April 7th. Registration closes on May 19th.
Today – February 12 we stand in solidarity with moms and dads across our community to remember and honor each and every CdLS Angel.
Researcher, John Falligant, Ph.D. is recruiting participants for a research study investigating problem behavior in children and adolescents with CdLS (ages 3-15).
Researcher, Justin Chun is looking for participants for a research survey whose children ages 6-25 with CdLS have emotional outbursts at least once a month.
Interested in being part of the Foundation’s Public Affairs Committee? Contact Gabrielle Nadeau at outreach@CdLSusa.org for more info.
CdLS Calendar
There are still many calendars left to purchase! Enjoy facts and inspiration all year long. Don’t be left in the dark .. buy your’s today.