Because We Are Strong

Hey Peeps ! it's Kristine and  I'm flying solo tonight; however, this disease is one that hits both tt and I very deeply. so I am super excited to sit down with veronica. Veronica has been a chronic illness warrior for over 15 years. She has been battling Crohn's disease for 15 years. Crohn’s disease is a type of inflammatory bowel disease. It causes inflammation of your digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss, and malnutrition. Crohn’s disease and the way it affects people is different for everyone, so we are excited to sit down with Veronica and get her story.


I have been an invisible illness victim, survivor, and warrior for the last 15+ years (exactly half of my life). I went through the ups and downs of Crohn’s Disease, as it reeked havoc on my body and mind in a major way.


Connect with Veronica:
@crohns_queen 
I am always interested to connect with and meet fellow invisible illness warriors.

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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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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Taylor Kane is a 22-year-old rare disease advocate and founder of Remember The Girls, an organization dedicated to women with X-linked disorders. Taylor is passionate about fighting gender bias in healthcare, especially for women with rare conditions.

Connect with Taylor:

PURCHASE YOUR COPY OF RARE LIKE US!

Taylors 2 minute rare disease challenge:
https://www.youtube.com/watch?app=desktop&v=5DET6Alw3bA&feature=youtu.be

Instagram/Twitter: @rarelikeher / @rarelikeusbooks
taylorkane.com

Remember the Girls:
https://www.rememberthegirls.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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Hey peeps! Theresa couldn't make it this week so You're stuck with me! Don't get too excited! This week I am sitting down with Autumn who has five children. 4 boys and 1 girl. Her daughter Story Grace is legally blind and deaf and is unable to walk, talk, or eat by mouth. Autumn uses hiking as a way of bonding with her children as well as therapy but she found it difficult to hike as well as bring along everything needed for her daughter. Her daughter is tube fed and the blended food for her feeding tube was too heavy to pack. So she created her own solution. Autumn is the founder and sole creator of Wholestory Meals and we can't wait for you to learn all about her daughter and her much-needed solution for tube-fed children. I'm your host Kristine so let's Dive in!

Connect with Autumn & Whole Story Meals:
_________________________________________________

www.wholestorymeals.com
@wholestorymeals

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

Whitney is a digital marketing and technology consultant and founder of The Pink Zebra Club. She has 3 children who she loves fiercely: a spunky toddler at home and two beautiful children in heaven. When her first daughter Olivia was born with a severe and life-limiting neuromuscular disease, she began speaking openly online about her family’s journey with undiagnosed rare disease, child loss, and living through grief. Since then, she has walked through pregnancy after loss, parenting after loss, and repeat child loss, when her son Rory died from the same disease in 2019.

Through her honest conversations online, and the work of The Pink Zebra Club, Whitney hopes to provide practical support and hope to other grieving parents.

You can get involved with The Pink Zebra Club here (http://thepinkzebraclub.com/), and learn more about Whitney by following along via Instagram: (https://www.instagram.com/whitneyprior)

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

Connect with us:
findyourrare.com
@findyourrare

@largerthanbws

@thatrare.girl

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

BabbleOnBrooke is an Inspirational Speaker, Biz + Life Coach, and Invisible Disabilities Advocate who combines her entertainment background and 9-year spinal injury recovery journey, "From Hollywood To Housebound To Healing" to empower others.

Follow Brooke on any social media, including Instagram, Twitter, Facebook and Tik Tok @BabbleOnBrooke! www.BabbleOnBrooke.com

BabbleOnBrooke is an Inspirational Speaker, Biz + Life Coach, and Invisible Disabilities Advocate who combines her entertainment background and 9-year spinal injury recovery journey, "From Hollywood To Housebound To Healing" to empower others. Her injury severely impacted her breathing and speaking, and threatened her life, yet here she is, babbling on. She kept going and encourages you to do the same. You are not alone and as she always says, "When you wake up breathing, it's a good day!" Follow her online for more and sign up for her e-mail list at www.BabbleOnBrooke.com to receive free Monthly Mindset Tips + Tools that will help you on your way.

As listeners of the Because We Are Strong podcast, receive 50% off her upcoming online training, "How To Survive - and THRIVE! - In Isolation" with code RARE. Join her e-mail list at www.BabbleOnBrooke.com for more information.

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

Award Show Executive Producer | Journalist | Competitive Athlete | Dance Teacher

Mentored by PR/Media mogul Michele Elyzabeth, Pamela Price is the Vice President of LATF USA, a daily lifestyle/entertainment news site, as well as the Executive Producer of the acclaimed annual award show, the Hollywood Beauty Awards, known as the ‘Oscars of Beauty’ and the Daytime Beauty Awards, which celebrates ‘Science behind Beauty.’ 

From the office to the outdoors, Pamela is a competitive trail runner, obstacle course athlete and American Ninja Warrior. 

THE PRODUCER | JOURNALIST

At LATF, she directs story assignments, runs content management, social media, conducts celebrity interviews, and oversees the creative process/design of the news site and magazine. She writes film reviews, fitness tips, gear/apparel must-haves and race highlights. As an award show producer, Pamela runs talent booking, board and award roster correspondence, as well as oversees the show's production with Founder, Michele Elyzabeth and President, Otis Stokes. 

THE ATHLETE | DANCE TEACHER

A formally trained dancer, Pamela began her dance training at the Portland Ballet Company in Maine before studying contemporary and Luigi jazz, while simultaneously running track & field, as well as cross-country; specializing in hurdles and long distance.

She taught dance in New York City and ran the dance department for YMCA’s “Strong Kids Campaign” as well as their after-school hip-hop classes for youth and teens. Choreographing for musicals including “Cabaret” and “Pippin” at French Woods Festival of the Performing Arts, Pamela served as co-head of their dance department and taught contemporary & hip-hop at East Hollywood’s Dance Refuge. She has choreographed for music videos, including Kaneholler’s “Lite Brite” single and the early days of Justine Marino & Heidi Heaslet’s “Funny Dance Show,” which now airs on E!. 

Pamela was scouted for Season 11 of American Ninja Warrior. She competed at the Los Angeles Regionals at Universal Studios. Throughout the year, she competes in trail and obstacle course races; representing her Pro Race Team, HARDKOUR PERFORMANCE under the direction of Coach Justin Nucum. 

Pamela’s top competitive results include: 

• 1st Place - Spartan Trail Race (AG*) - Lebec, CA - 2019 
• 1st Place - Valenca Trail Race - 2019 
• 1st Place - Tougher Mudder - Glen Helen Raceway - 2019 
• 1st Place - Spacerock Trail Race - 2019 
• 3rd Place - USA OCR National Championships / Spartan (AG) - 2018 

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Connect with Pamela:

https://www.instagram.com/pamdrenaline/

https://www.pamelaprice.com 

@wecarewhen

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

Stephanie was born with Cystic Fibrosis, a genetic disease that primarily leads to irreparable damage of the lungs. In spite of the considerable challenges, Stephanie continued her successful career as a designer all while being a devoted wife and loving mother. Unfortunately, CF started to have a greater impact on her life, forcing her to leave her career so that she could focus on her health. Through much introspection and painful self-acceptance, Stephanie made the courageous decision to begin sharing her story, reaching thousands through her platform and has made profoundly impactful changes on the lives of others living with CF. After a battle with an unrelenting pneumonia in 2019, Stephanie learned of a new "miracle medicine" that became available in the US. Unfortunately, this drug is not available in Canada, but this did not deter Stephanie. Stephanie was interviewed by local and national news stations; she reached out to her local members of government and even wrote to each executive of the pharmaceutical company. All that effort paid off when she learned that she was granted Compassionate Care by the manufacturer in January 2020, literally saving her life. Through unwavering faith and tireless effort, Stephanie was able to make her dreams a reality.

After this personal victory, Stephanie continued her advocacy work to help other CF patients fight for their right to breathe. Together with 3 CF patients that were fighting for their lives and the parent of a CF patient, Stephanie co-founded the volunteer advocacy group called CF Get Loud. The team’s mission is to elevate patients' stories; empowering them to use their voices and educate families on the barriers that are blocking the accessibility of innovative medicine. Today, the movement has over 4300 members and is growing. Together, they continue to fight to save the lives of 4400 Canadians. 

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Connect with Stephanie
@rosielifewithgrey

@cfgetloud

www.cfgetloud.com

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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

My name is Terry Pirovolakis and on April 2nd my life changed forever. My son Michael was diagnosed with a terrible neurodegenerative disease that will take away his ability to use his limbs and mind. My goal is to cure my son and as many children as I can of this terrible disease.

Connect with Terry:

@cure_spg50 on Instagram

Help the cause:

https://CureSPG50.org
https://ca.gofundme.com/f/cure-michael-curespg50-spg50

You can also help our Cure SPG50 by shopping at RARE. and choosing Cure SPG50 at check out or shopping our Greater Than SPG50 Tee. >>> https://findyourrare.info/spg50 

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