CdLS Awareness Day
Shedding light on CdLS, fostering understanding and support for those navigating this unique journey of resilience and strength.
Educating the public and raising awareness about CdLS syndrome, as well as letting people know about the support available to those affected, is what this important day is all about. Learn a bit more and show some care in honor of CdLS Awareness Day!Â
History of CdLS Awareness Day
Also known as Cornelia de Lange Syndrome, CdLS is a genetic disorder that is present when the affected child is born. The syndrome is typically not inherited from a parent but is due to an acquired mutation during development. It is characterized by slow growth before and after birth that leads to a short stature and affects many other parts of the body as well.
The first documented case of CdLS was in 1916 by Walter Brachman. Later, in 1933, the disorder was named after a Dutch pediatrician who was responsible for describing the illness, Cornelia de Lange. Sometimes it is called Brachman de Lange Syndrome, as a combination of these two names.
CdLS Awareness Day was established with the purpose of educating and raising awareness about this syndrome and the people affected by it. Occurring in approximately 1 in every 10,000 births in the US, this is a very rare disorder that can cause feelings of isolation. The hope for CdLS Awareness Day is that more affected families can be brought together and the general public educated to create more opportunities for support and care.
How to Celebrate CdLS Awareness Day
Show support and help educate the public about this rare syndrome by celebrating CdLS Awareness Day with some of these ideas:
Learn More About CdLSÂ
The CdLS Foundation is the only non-profit organization in the US dedicated to helping those with this syndrome. They offer a number of different ways to get connected and involved with CdLS Awareness Day, including learning a bit more about it with facts like these:
-
Children born with CdLS may have abnormalities in their bones that can affect their hands, fingers and arms.
-
People with CdLS may also have certain distinctive facial features, such as eyebrows that arch and almost meet in the middle, low-set ears, a small nose that is turned upwards and small teeth that are widely spaced apart.
-
In addition, some intellectual disabilities may be present with CdLS, commonly appearing with some of the same features as autism spectrum disorder, perhaps affecting social interactions or communication.
Connect with the CdLS Foundation
Families who are affected by CdLS can always use more support. CdLS Awareness Day is an excellent time to get connected with the foundation. It is estimated that approximately 30,000 Americans are living with this syndrome, but less than 10% of them are connected with the CdLS Foundation, so raising awareness could help thousands of others to get the support they need. Parents, grandparents, siblings, friends and, of course, individuals who are diagnosed with the syndrome can all find support through the foundation.
Those who don’t know anyone with this syndrome but would like to make a difference can make a donation to the CdLS Foundation in honor of CdLS Awareness Day.Â
Also on ...
View all holidays
National Shrimp Day
Celebrate the taste of the sea! Indulge in delicious shrimp dishes, discover new recipes, and gather with friends and family.
National Windmill Day
Drive out to windmill country, or read up about the history of windmills and how they can provide clean, sustainable energy by harnessing Earth’s natural power.
Mother Ocean Day
Pay homage to the incredible force of nature that is the ocean, which houses over a million different species, many of which are endangered or threatened.
World Lupus Day
Learn the symptoms so you can act fast against the life-threatening autoimmune disease known as Lupus, which effects at least five million people globally.
We think you may also like...
National Birth Defects Awareness Month
Fostering empathy and understanding for those facing unique health challenges empowers communities to embrace diversity and advocate for inclusion.
International Pregnancy and Infant Loss Remembrance Day
In solemn unity, hearts gather to honor the tender souls who left too soon, fostering support and healing for those who grieve.
National Blood Donor Month
Giving a small part of oneself to help others in need, the act of contributing to a vital lifeline that can save lives.
National Children’s Dental Health Month
Maintaining those young smiles, preventing cavities, and fostering lifelong oral wellness, a crucial aspect of overall child development.
