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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!
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Mangler du episoder?
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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
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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
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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
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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
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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
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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
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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.m4aPart Two: https://mcdn.podbean.com/.../Kayla_Pitts_Part_2br217.m4a
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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.
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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.
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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.
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Part two of We Saved You A Seat's conversation with Jade highlights the amazing community Jade and her family have surrounding them. Hearing how Jade's family, friends, and community surrounded and supported Haddie will give you ideas and inspire you to help others impacted by childhood cancer.
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Today you have the incredible opportunity to meet Jade Campbell and hear pieces of their daughter's journey and diagnosis of B-Cell Acute Lymphoblastic Leukemia.
As we continue to honor families who have experienced or are experiencing the childhood cancer journey, today we are reminded to celebrate, encourage, and cheer on the families who are fighting for a healthy future.
We are releasing our conversation with Jade in three parts today and we know all who hear, who are fighting for their healthy future, will feel encouraged and inspired...
Part One: Diagnosis
Part Two: Friends, Family and Community Support (Ideas to help others)
Part Three: Resources, Sibling Support, and Update on Haddie
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The Mack Impact | The Mack Impact
This release is one that openly shares and discusses the truth of pediatric oncology and the grief, no family should ever have to experience. It is important to help raise awareness, support, and educate our community that when this happens to a friend of the cousin to a neighbor who lives three doors down from you, you can help guide them to a resource tied to people who will love them and help carry them through the hard.
Thank you for being a part of this community and sharing stories of strength.
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We are well aware of the reasons people don't discuss pediatric cancer... It's hard...
It's hard to think about. It's hard to think about any child experiencing cancer. It's hard to think about the possibility of your child experiencing cancer. We can become overwhelmed with grief and sadness as we imagine these things happening to others, especially children, and then deep sadness when we have to face the truth that it does happen, and when it happens, some don't survive.
Today we get to meet Mackenzie Asher, through the eyes of her daddy... You hear the hard, the love, and the strength!!
Mackenzie's family started a 501(c)(3) nonprofit organization in her honor, and you won't want to miss some of the amazing things they get to do for Oklahoma Families who are fighting life threatening illness. Things these incredible kids and families wouldn't get to do without their help!
Visit: Mackenzie’s Story | The Mack Impact today!!
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Our guest today is Long Tran with F.A.I.T.H. KIDS, Inc. (https://faithkids10.org/).
Long, with his wife, Mary, started a 501c3 nonprofit organization, after their family lived through the devastating experience of their oldest having leukemia to help others. In today's podcast, you will hear pieces of their journey and learn more about how you might be able to help children and families living with cancer and other life-threatening illnesses.
F.A.I.T.H. KIDS hosts an annual bowling tournament to help raise funds for families Fighting Against Illness To Heal (F.A.I.T.H KIDS)... This year's tournament, on Saturday, September 30, 2023, will be held in Edmond, OK at Bowlero Edmond (3501 S. Boulevard, Edmond, OK 73013) and truly there is something for everyone!!
As we help kick off Childhood Cancer Awareness Month, we hope you will find FAITH KIDS, Inc on Facebook and other social media platforms, follow, and share their information so that we can unite to bring awareness, education, conversation, and support to others who might be facing life threatening illness.
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Lauren talks us through logical consequences, the energy drain, and working through different perspectives of discipline and why we do what we do as parents.
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Participants will explore what it means to accept, love, and support our children, as well as how we came to arrive at our own norms for parenting and family. Participants will have brief opportunities to identify motivations and goals, and areas for possible growth, because it can always be better.
- Se mer
