We Saved You a Seat

Every year, on the last day of February, the world comes together to recognize Rare Disease Day—a global initiative dedicated to raising awareness for rare diseases and the millions of people affected by them.

 

Today, We Saved You A Seat is incredibly honored to share a few things Oklahoma is doing to help bring awareness, advocacy, conversation and support to and for those impacted by a rare diagnosis.

 

Today, Sky Collins is here to discuss the incredible community group, Oklahoma Rare, of which she is a co-founder and shares ways you can get involved.  

 

Addition Resources Mentioned:

https://everylifefoundation.org/rare-advocates/virtual-youth-hill-day/

 

#OklahomaRare #MalanSyndrome  #OKRare  #RareDiseaseAwareness  #UltraRareDisease  #EveryLifeFoundation  #PartnersInPolicy  #SB207  #SenatorCarriHicks #RareDiseaseDay #RareDiagnosis

In this presentation, we will discuss how to set goals for positive change for all ages while still having a self-compassion focus. This can help us break the pattern of shame about things we want to change and instead apply simple but profound principles for effective growth.

If you would like the presentation handouts please email:

erin-parks@oklahomafamilynetwork.org

Sometimes we are so focused on behavior that we don't realize how powerful purposeful relationships can be in responding to negative behavior and preventing things from ever happening. We will look at the work of Dr. Lori Desautels and her book Connections over Compliance to learn brain-based strategies for connecting with kids and responding to and preventing frustrating behaviors.

Welcome to National Wear Red Day 2025!

 

After finally getting a diagnosis of Postpartum Cardiomyopathy, Chrissy learns what her future looks like and shares with us how she processed this unexpected diagnosis and what she did to survive as a mom who needed lots of help from doctors, family, and friends.

 

To learn more from the American Heart Association about Postpartum Cardiomyopathy (or Peripartum Cardiomyopathy) visit the American Heart Association's website.

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.

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.

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