We Saved You a Seat

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

2023 Prematurity Awareness Month with Kayla Pitts, Mom of 26-Week’er - Part Three

Welcome to Prematurity Awareness Month and World Prematurity Day!

 

Prematurity Awareness Month is observed every November, with World Prematurity Day on November 17th, to raise awareness of preterm birth and the concerns of preterm babies and their families worldwide. An estimated 15 million babies around the world are born premature each year and more than one million of them do not survive their early birth.

 

Today, We Saved You A Seat, visits with Kayla Pitts, mom to Zetta who was born at 26.1 weeks gestation.

 

Her conversation (broken into 3 parts) highlights maternal mental health in the perinatal and postpartum period, her preterm delivery, breastfeeding, and the treatment options she pursued for her health and family.

 

Part One: https://mcdn.podbean.com/mf/web/367x5m/Kayla_Pitts9pb0m.m4a

Part Two: https://mcdn.podbean.com/.../Kayla_Pitts_Part_2br217.m4a

2023 Prematurity Awareness Month with Kayla Pitts, Mom of 26-Week’er - Part Two

Thank you for joining us for part two of Kayla's journey with premature birth as she shares her experience where she highlights some very specific emotions and experiences tied to Zetta's birth.   

2023 Prematurity Awareness Month with Kayla Pitts, Mom of 26-Week’er - Part One

Welcome to Prematurity Awareness Month!

Prematurity Awareness Month is observed every November, with World Prematurity Day on 17 November, to raise awareness of preterm birth and the concerns of preterm babies and their families worldwide. An estimated 15 million babies around the world are born premature each year and more than one million of them do not survive their early birth.

Today, We Saved You A Seat, visits with Kayla Pitts, mom to Zetta who was born at 26.1 weeks gestation.

Her conversation (broken into 3 parts) highlights maternal mental health in the perinatal and postpartum period, her preterm delivery, breastfeeding, and treatment options she pursued for her health and family.

Andrew Lyon’s Lived Experience with ALL

The Author of Leon The Brave Little Lion joins us today to discuss how his experiences with childhood cancer gave him a purpose and vision to support others who are part of his childhood cancer circle.

 

OFN's conversation with Andrew will leave you feeling encouraged, educated, and inspired to love and support families in unique and beautiful ways.

B-Cell Acute Lymphoblastic Leukemia Journey (Part Three) with Jade Campbell

Part three of our conversation with Jade shares the importance and impact that local non-profits have on families.  You will hear Jade share just a little about some organizations that made big impacts on their family:

The Kids Korral, KClub, Wyatt's Wings, and Art with Heart are a few examples of organizations that touched the Campbell's lives and will continue to leave an impact on other families fighting childhood cancer.

 

You will also hear an update on how Haddie is doing now; and we never want to leave out siblings.  Siblings who are being touched by a brother or sister fighting cancer, play an important role and are impacted as well; and this conversation shares some of the real and raw moments involving siblings in that care.

 

On behalf of the Campbell Family, thank you for listening today, supporting them, and praying for Haddie (and others) as childhood cancer impacts so many in our communities.