Because We Are Strong

2020 a year no one could have predicted. One we honestly weren’t sure how to be thankful for. But once we sat down and thought about it we realized despite the ridiculousness of 2020, without it we wouldn’t have accomplished some of what we have. Sometimes it’s important to acknowledge and be thankful for the struggles. After all, they can get you to where you are ultimately headed but it’s okay to acknowledge that it sucks along the way!

Happy Thanksgiving and thank you for being here >> xo -those RARE. girls

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Our season of sleigh starts at 6pm tonight be sure to text "findyourrare" to 33777 for exclusive deals, prizes, and much more!

https://www.findyourrare.com

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

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DISABILITY IS A BADGE OF HONOR.
Creating Strength and Empowerment for People with Disabilities
Erin Noon Kay is the CEO & Founder of Claiming Disability Inc. Erin identifies as a "fierce disabled entrepreneurial woman," with Cerebral Palsy. She uses a walker and wheelchair occasionally, but she believes it's "OK" to look disabled and is working hard to bring representation for disability in film and everyday culture through media projects and disability-related content.  She believes "disabled," is NOT is a bad word, but a badge of honor, a beautiful community, a culture. She has worked in the non-profit, governmental, and business sectors for over 10 years.

The original concept of Claiming Disability, Inc. started as a collective partnership with her friend, Mollie Miller, who also has Cerebral Palsy and is a strong disabilities advocate. Although, Mollie has moved on the message of empowerment and acceptance in the disabled community continues to strive and grow.

  Now, Claiming Disability, Inc is connected to over 3,000 disability advocates from around the world, including Jim Lebrecht and Nicole Newnhawn, the Directors/Executive Producers of Crip Camp. A groundbreaking summer camp galvanizes a group of teens with disabilities to help build a movement, forging a new path toward greater equality.

Claiming Disability Inc wants to spread our messages of empowerment and compassion. We believe that a single action can make a difference in the community, and that shared experiences can greatly impact inclusion. Through advocacy and outreach activities, our team and our community of supporters work to embrace diversity and disability as an asset toward the greater good.


CLAIMING DISABILITY INC AT A GLANCE
Helping people find strength and courage to celebrate disability

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Connect with Erin
Instagram
@claiming_disability_inc

Facebook

Website: https://www.claimingdisabilityinc.org/

Podcast: https://open.spotify.com/show/2Yn4fadpSRth3tRTRkiLaH

Merch: https://teespring.com/stores/claiming-disability-ink-2?page=1

Films: https://www.youtube.com/watch?v=0U2uijKb5J8&ab_channel=EastersealsDisabilityFilmChallenge

Sponsored Partnerships: https://thatshandi.co/

168Lyfwtjm06sEdvaCHP

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

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Hey peeps! It was just Kristine this episode and I am back this week again hosting solo but we have another great episode for you today as I have the pleasure of sitting down with Orah Lasko who is the mother of Luke; Luke has a rare genetic disorder syndrome called Hao Fountain syndrome. As with to many of these rare genetic disorders Jake is among the ultra-rare with only 73 older cases known in the world. As you all know there is so much that goes into being a rare family so let's dive right in and hear from someone who knows best

I advocated for my son for over nine months before he finally got his rare disease diagnosis. I want to create awareness of his disease but also teach people how important it is to be your child’s advocate and always push for answers.

Connect With Orah:
@orahlasko and also the USP7

(Hao-Fountan Syndrome) foundation website usp7.org

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

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We are back with another episode of Because we Are strong. Today we are sitting down with Effie, the mother of a rare disease warrior and a woman determined to make a difference. Effie has created her own podcast called Once upon a Gene, in honor of her son Ford who was born with a rare genetic disease called CTNNB1 syndrome. Many genetic syndromes such as CTNNB1 syndrome vary in their severity. There are only about 200 known people in the world who have CTNNB1 syndrome. We could not be more excited to bring the mother of one of them on our podcast to tell you all about it. We all know mommas know best!

Effie Parks was born in the magical land of Montana, where she was raised with her 12 loving siblings.  After moving to Washington and marrying her husband, they were blessed with the birth of their son, Ford Canon Parks.  When she learned that Ford had been born with an extremely rare genetic condition – CTNNB1 syndrome – she dove into the world of advocacy.  Now, she is the host of her own podcast, Once Upon a Gene, where she speaks to others about their journey through life with a rare disease.

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Connect with Effie:

https://www.instagram.com/onceuponagene.podcast/ 

https://twitter.com/OnceUponAGene

https://www.facebook.com/groups/1877643259173346  

https://www.linkedin.com/in/effie-parks-741013164/

https://effieparks.com/

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

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Jessica Taylor-Bearman is a bestselling author of the award-winning ‘A Girl Behind Dark Glasses’, which follows her journey as she goes from being a healthy teenager to fighting for her life in hospital with a very severe form of Myalgic Encephalomyelitis. She spent over a decade being completely bedridden and had to relearn how to speak, move, and eat. She always wanted to be an author and all the time she could not communicate properly, she kept a diary called Bug which she used to write her book.


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Connect with Jessica:
 Instagram: @jayletay and @behinddarkglasses
Twitter: @jayletay
Facebook www.facebook.com/TheWorldofOneRoom and www.facebook.com/AGirlBehindDarkGlasses
Website: www.jaytay.co.uk

Order :A Girl Behind Dark Glasses
https://www.amazon.com/A-Girl-Behind-Dark-Glasses/dp/B07GNW8PBS/ref=sr_1_1?dchild=1&keywords=a+girl+behind+dark+glasses&qid=1602886573&sr=8-1

Pre-order: A Girl in One Room is https://www.hashtagpress.co.uk/product-page/a-girl-in-one-room-by-jessica-taylor-bearman-temp-cover
(It will also be available at all good bookshops and Amazon)

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

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Sometimes people feel they're being helpful when they shower your situation with positivity and while positivity in rare disease is necessary for survival there is such a thing as to is positivity. When you use positivity so much to the point that you are negating someone’s struggles and experiences, that’s when it becomes toxic and not helpful. We all can learn from each other and their struggles. It’s okay to acknowledge the hard parts of your journey.

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Larger Than BWS Blog ---> https://www.largerthanbws.com
Social Media ---> @largerthanbws

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

November is caregiver awareness month. Being a caregiver to someone who is chronically ill is taxing and tiring and thankless. This week we sat down with Carrie, Kristine’s wife, to get her to take on life as a caretaker. She shares her experience of watching her best friend and love of her life get sick and how she manages a caretaker role as well as the role of a spouse.

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

Jacob Thompson (TEN20) has gone from diagnosis to destiny. His childhood dream was to be a professional athlete. He would tell you that, sometimes, our dreams for our lives need to die before we can live the true dreams and purpose that we were created for. He wouldn't only say this; he lives it every day.

In his late teens, Jacob started having trouble performing athletically at a high level. Throughout college and after graduation he had not been feeling right physically for a long time and finally decided to see a doctor. After a series of tests, he was diagnosed with a rare, genetic condition known as Friedreich's Ataxia (FA). FA causes progressive damage to the cerebral cortex, causing difficulties in balance, coordination, and energy production, leading patients into a wheelchair and a shortened life expectancy.

This diagnosis was an opportunity for Jacob to give up on his life and his faith. Instead, he chooses daily to make the most out of his situation. He uses his story and his art as a way to inspire others, helping them persevere through their challenges and find their purpose. He has spoken and shared his art for over 10,000 people and counting, and is now working on his first book. 

Aside from speaking, spoken word, and hip-hop, Jacob, better known as JT, runs a high school mentoring program in Minneapolis and coaches football and basketball. He has a Master's degree from Bethel Seminary, is married to his beautiful wife, Abigail Thompson, and together they are raising their son, Titus.

Your trials aren’t meant to break you; they’re meant to make you. Keep on fighting and don’t quit. There is a purpose in your pain. Your struggle is meant to mold you into the person that you are meant to be. God has a plan for you!

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Connect with JT:

TEN20words.com
FB and IG @TEN20words

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

Kierra is a digital artist and blogger who is passionate about helping women navigate life after miscarriage and loss. Driven by her own experience with miscarriage (and lots of chips + salsa) she focuses on helping women not feel so alone in their journey.
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What are some tips you have for someone who experiences a miscarriage?

1. Delete all pregnancy apps

2. Unsubscribe from all pregnancy update emails

3. Research postpartum mood disorders so you can be on the lookout for them

What made you decide to create artwork of the children's families have lost?

I started out just creating artwork for myself but the. People started asking me to make some for them too and it was helping them heal like it was for me 

What plans do you have for your artwork? What is next for you?

I don’t think I’ll ever stop making the portraits even when I’m so stressed out I can’t sleep. The healing experience is so powerful and I have so much joy in providing that for people! I’d like to move towards starting a nonprofit to be able to provide even Moore care for these women

What is one of your biggest accomplishments so far when it comes to what you are doing in this community?

Helping raise awareness about miscarriage kits! The video I shared was able to reach over 2.1 million people and reading the comments made me even more confident in spreading the word! Women deserve closure in their loss

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Shop Kierra B Art:
Website: https://kierrabutcher.com/

Connect with Kierra:
Instagram:https://www.instagram.com/kierra_b_art/

Miscarriage Kit Video:
https://www.instagram.com/reel/CFkdoeXBK0C/?igshid=1hatbb0nsmuae

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

Rare stories aren’t always easy to tell. Our brand may be black and white but rare stories usually aren’t. Today we are sitting down with Kristine, CEO of rare, my business partner, and close friend. She shares her journey with her rare disease and what life has been like for her. We discuss how as a community we can work alongside one another to create change and bridge the gap.

Never Miss A RARE. Moment Text "FINDYOURRARE" to 33777

Check Out RARE.

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show