Because We Are Strong

This week we have a fun lighthearted episode to share with you, but one that is necessary in this community. This week we are sitting down with Dr. Fynan, a licensed mental health counselor with a phd in clinical sexology ! Michelle is passionate about supporting singles in shifting their mindset around dating, sex, and relationships, especially if the disability is present.
 
Meet Dr. Fryan>>I’m a clinical sexologist who is passionate about supporting singles in shifting their mindset around dating, sex, and relationships, especially if the disability is present. My hope is that this episode will water a seed of hope in people around finding love.

 Connect with me here for a free consulation: www.drfynan.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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Nikki is immersed in the world of spinal muscular atrophy, rare disease, and special needs and has become a fierce advocate for these communities. Nikki has spearheaded various charitable events reaching families, sponsors, and donors, to raise funds for medical research. She has spoken in front of live groups of hundreds of people to share her family’s story and promote the need for further medical research and funding.

Nikki, her son Miles, and the McIntosh family have been interviewed and featured in various newspapers and magazines, and their rare-disease journey has been highlighted in several documentary films.

Nikki has represented the rare-disease parent voice to various biotech companies. Through interviews, podcasts, speaking, and writing, she sheds light on the challenges parents face while raising children with a rare disease. 

Nikki is the founder and creator of Rare Mamas, a resource and community to support rare disease mothers.

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Connect with Nikki:


E-Mail: [email protected]
@rare_mamas
Rare Mamas

For speaking, press, or partnerships contact: [email protected]

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 were back for another week of Because We are Strong, where through other peoples stories we try to raise awareness and bridge the gap between rare disease & chronic illness and the rest of the world. This week we are sitting down with Lindsay - a mother of 3 year old twins Logan and Luna. Ever since birth her son Logan has had issues and started therapy at 6 months of age. He has several diagnoses as well as a variant of unknown significance on the USP9X gene. We are excited to sit down with Lindsay and hear her share their story. 


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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

Our rare disease story began in 2014 when Marcus was diagnosed with a neurological disease known as Trigeminal Neuralgia. Running has proven to be a positive outlet while we continue to navigate the difficult world of rare diseases. We founded SeeRareRun in 2019 to combine our passion for running with our desire to spread positivity to others in the rare disease community.

Links are below:

Website: https://www.seerarerun.org/

Direct link to sign up for our race: https://runsignup.com/Race/NC/ChapelHill/seerarerun5k

Instagram: https://www.instagram.com/seerarerun/
(Handle is @seerarerun)

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

Tonight we are sitting down with a mother who was faced with an incredibly difficult decision and one that didn't come without criticism. When Ivorie Nicole became pregnant with her little girl River she was over the moon. The feeling of excitement and joy quickly halted when she received the news that her daughter had bilateral renal agenesis. Bilateral Renal Agenesis is the absence of both kidneys at birth. It is a genetic disorder characterized by a failure of the kidneys to develop. We hope you brought your tissues for this one ! 

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

In Loving Memory Of Oliver Collins 1993-2021  "A zebra earned his wings; fly free Ollie"

Welcome back to another episode of Because We are Strong, where we attempt to bridge the gap between the rare disease and chronic illness community and the rest of the world. Today we are chatting with Oliver, a disability advocate and a 27-year-old lawyer from Australia who hopes to show people that having a disability shouldn’t hold you back from achieving anything you set your mind to.

Connect with Oliver:

https://www.instagram.com/imolliecollins/
https://twitter.com/imolliecollins?lang=en
Check out Oliver's blog: https://imolliecollins.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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This special rare disease day minisode is featuring Stephanie Cherry. 
My name is Stephanie Cherry and I am a native of Fairfield, Ca. I have two younger sisters, a fiancée, and almost two-year-old son. I’ve been working for the Solano County Sheriff’s Office for approximately 9 years. For the agency, I worked as a Correctional Officer for over 4 years and as a Deputy for going on 5 years. I started writing poetry as a young child which turned into me writing and performing music. My overall goal with my writings/music has always been to be powerful, impactful, and influential. Being popular has never really been a goal of mine. 

Connect with Stephanie:

Instagram: @thesexy_0ne

Tiktok: @thesexy0ne

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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Meet Lacey ! A sister to two siblings with their own unique set of needs and a fierce advocate for rare disease and inclusivity. Lacey uses her voice and her determination to try and make the world a better place for every rare fighter out there.

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

 Were sitting down again this week to chat and listen to Brooke's story. Brooke is a mother to two children, one of which has a rare disorder called PKU. PKU is an inherited metabolic disease affecting the brain through increased levels of a substance called phenylalanine (Phe) in the blood. PKU infants in the US are diagnosed in the first few days of life through the federally mandated newborn screening program. This is important because the damage caused by toxic levels of Phe in the first few years of life is irreversible. Brooke is here with us today to not only share her story and educate others but to raise awareness for PKU and to be that person that mothers of other newly diagnosed children can turn to.

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

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