We Saved You a Seat

Heart Health in Pregnancy and After with Chrissy Cleary (Part 1)

On December 11th, 2024 Chrissy Cleary proudly announced, "awww my Heart Failure is 18 - an adult." 

 

Chrissy Cleary is mom to three children, and after she delivered her 3rd baby, she developed some scary symptoms that some medical professionals identified as "normal" and/or wrote off as anxiety.

 

In this episode of We Saved You A Seat, Chrissy describes truly easy and wonderful pregnancies, her dreams of motherhood, and having a large family. Her dreams were interrupted soon after the birth of her third child.

 

Thank you, Chrissy, for sharing your story of strength with us and allowing us to honor you this February and bring awareness and conversation to Heart Health during and after pregnancy.

Taking Care of the Caregiver/Compassion Fatigue with Lauren Alvarez

Being a parent or a caregiver can be exhausting. We can become so overwhelmed by the never-ending list of things to do that we lose sight of taking care of ourselves and can experience burnout. Together we will complete a survey of how we are doing with self-care and build a practical plan to help us take better care of ourselves so we can also take care of the important people in our lives and avoid burnout. 

 

Although this session was recorded in December, it is full of great information reminding us compassion fatigue is very real and takes a toll on those who are caregivers.

Trauma and Big Feelings with Lauren Alvarez

Presentation Power Point

World Down Syndrome Day Part Two - with Charity Cook and Cassie

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!  

 

 

 

 

World Down Syndrome Day Part One - With Charity Cook and Cassie

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 

Rare Syndrome Awareness (CdLS) with Charles Moore - Episode 04

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

 

 

 

Rare Syndrome Awareness (CdLS) with Charles Moore - Episode 03

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

Rare Syndrome Awareness (CdLS) with Charles Moore - Episode 02

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 

Rare Syndrome Awareness (CdLS) with Charles Moore - Episode 01

Oklahoma Family Network's We Saved You A Seat had the incredible privilege to sit down with Charles Moore. Our fun, education, and meaningful conversation will be released fully in 4 separate episodes as we prepare to celebrate and honor the uniqueness of 300 million people worldwide who live with a rare disease on February 29th.

 

We introduce you to Charles Moore. He is a father to two children: a 13-year-old son, Charles III, who has Cornelia de Lange syndrome (CdLS), and a 16-year-old daughter, Zion. He has independently raised his children for most of their lives.

 

In this first episode of our 4-part release, Charles visits with us about his OKLEND (Leadership Education in Neurodevelopmental and Related Disabilities) experience. He also takes us back through early ultrasounds, delivery, and the diagnostic process for Charles III.

 

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 #OKLEND

 

Mindful Self-Compassion with Lauren Alvarez

Are you being kind to yourself?  Lauren Alvarez walks us through Mindful Self-Compassion and some amazing training she provided to Oklahoma Family Network families. I know you will be encouraged by her words and knowledge.  

Lauren introduces us to a self-compassion test, and we encourage you to take the no right or wrong answers test to learn a little more about yourself and how you can become aware of your own self-compassion.  Take the Self-Compassion Test