We Saved You a Seat Oklahoma Family Network

Presentation Power Point

Happy World Down Syndrome Day (3/21)!!
 
World Down Syndrome Day (WDSD), March 21st, is a global awareness day officially observed by the United Nations since 2012.  This day encourages conversation and education to help end the stereotypes and encourage inclusion.
 
Today, Carter's Mom and Sister highlight some of the amazing resources and advocacy they have been involved in as they support Carter and others with Down Syndrome!  
 
 
 
 

Tomorrow is World Down Syndrome Day, and TODAY we want you to meet Carter and his family in our first release of our two-part series highlighting and celebrating those with Down Syndrome.
 
Today's conversation walks you through some of the emotional moments tied to learning Carter would have Down Syndrome, as well as, his delivery, NICU stay, his first surgery, and some thoughts from his sibling, Cassie.
 
Carter has his very own TikTok channel: https://www.tiktok.com/@carters_kitchen18
 
Part two of our conversation with Charity and Cassie will be released tomorrow as we celebrate World Down Syndrome Day! 
 
#WorldDownSyndromeDay #CrazySocks #DownSyndromeAssociation #DSACO 

Oklahoma Family Network is thankful to have you join us today for the final release in this series and conversation with Charles, to help us celebrate what makes Charles III unique as we celebrate Rare Day today!!!
 
You will hear Charles brag on his daughter Zion and speak to the sibling relationship that Zion has with her little brother, Charles III. He also discussed tips he has for those in the community on engaging him and Charles III in conversation when you see them out and about.  And last, but certainly not least, we wrap up our great conversation with Charles putting the disability label away and tells us about his incredible son and his big personality!
 
Charles has big goals and dreams; and wants others to know about SibShops through SoonerSuccess.
 

Rare Disease Day is the official international awareness-raising campaign for rare diseases, observed annually on the last day of February. The primary goal of this campaign is to increase awareness among the general public and decision-makers about rare diseases and their influence on the lives of families living with these conditions.


 


With over 300 million people globally living with a rare disease, we join hands across borders and amidst the 6000+ rare diseases to advocate for equitable access to diagnosis, treatment, care, and social opportunities.


 


Rare disease statistics to share with others:


While each disease may be rare, collectively, they impact a large number of people.


300 million people worldwide live with a rare disease.


There are over 6000 different rare diseases.


72% of rare diseases are genetic.


70% of these rare genetic diseases begin in childhood.
 
#CdLS #ShareYourColors #Rare #LittleLighthouse #SoonerSuccess #SibShops

 
 
 

Welcome to the 3rd episode of our conversation with Charles.  We continue to bring education and support to others leading up to February 29, where we celebrate the uniqueness of being rare! (rarediseaseday.org).


 


Today we discuss Charles III's transition from Little Lighthouse into public school and the partnerships that helped make the process as smooth as possible.  


 


Charles also educates us from a parent's perspective about Cornelia de Lange Syndrome and what he wishes everyone knew about CdLS.  His words and expertise from a parent's perspective help shed light on this rare syndrome.

 

Rare Disease Day is the official international awareness-raising campaign for rare diseases, observed annually on the last day of February. The primary goal of this campaign is to increase awareness among the general public and decision-makers about rare diseases and their influence on the lives of families living with these conditions.


 


With over 300 million people globally living with a rare disease, we join hands across borders and amidst the 6000+ rare diseases to advocate for equitable access to diagnosis, treatment, care, and social opportunities.


 


Rare disease statistics to share with others:


While each disease may be rare, collectively, they impact a large number of people.


300 million people worldwide live with a rare disease.


There are over 6000 different rare diseases.


72% of rare diseases are genetic.


70% of these rare genetic diseases begin in childhood.
 
#CdLS #ShareYourColors #Rare #LittleLighthouse

Thank you for joining us for episode 2 (of 4) with Charles Moore as we discuss some of the most impactful people in his life as he began the advocacy journey on behalf of his son, Charles III.
 


Today's episode highlights his quest to learn as much as he can about Cornelia de Lange Syndrome (CdLS), and how incredibly helpful the cdlsusa.org website and organization has been in that search for knowledge and obtaining advocacy tips.
 


Charles also shares with us the role Little Light House in Tulsa, OK had on him as a parent to a young child with special health care needs.
 


Rare Disease Day is the official international awareness-raising campaign for rare diseases, observed annually on the last day of February. The primary goal of this campaign is to increase awareness among the general public and decision-makers about rare diseases and their influence on the lives of families living with these conditions.


 


With over 300 million people globally living with a rare disease, we join hands across borders and amidst the 6000+ rare diseases to advocate for equitable access to diagnosis, treatment, care, and social opportunities.


 


Rare disease statistics to share with others:


While each disease may be rare, collectively, they impact a large number of people.


300 million people worldwide live with a rare disease.


There are over 6000 different rare diseases.


72% of rare diseases are genetic.


70% of these rare genetic diseases begin in childhood.


 


#Rare #CdLS #Syndrome #Fatherhood #LittleLightHouse