WELCOME

“I am a mother, wife,
chronic pain warrior,
rare disease advocate,
blogger and business
owner with a fierce
passion to leave my
mark”

BLOG

My blog started as a simple way to express myself and manage the daily struggles with my sons rare disease, parenthood, and being a woman and mother. Little did I know it would become so much more then my little diary…

THE THOMAS FAMILY

At the core of everything I do is my family. They are my why and my biggest motivation. We are a family who constantly chooses to commit to each other everyday, whether life is hard, easy, beautiful, or ugly. We make a conscious decision to weather the storm alongside each other. We don’t have all the answers – just our experiences, which we hope can benefit and impact other people who are walking in similar shoes.

PODCAST

Our family had the pleasure of interviewing over 20 BWS families from around the world to learn about their experiences and help get their story out. We called these our Because We’re Strong Segments. We have now turned those stories along with other chronic illness and invisible struggles into a podcast. Our podcast is a place for those who struggle silently to no longer do so. We want people to share their voice and their story in the hopes of creating change.

INTERVIEW: Kristen Manieri and Better Daily Mindfulness Because We Are Strong

Meet Kristen:Have you ever had the feeling that you’re off course? Or maybe that life is moving so fast that you don’t even have time to catch your breath, never mind check in with yourself? Without setting time and space to be with our inner world, the outer world takes over. However, when we establish and cultivate a daily centering practice, we learn to navigate the outer world with intention and attention.I am a life coach, mindfulness teacher, podcast host, and author of Better Daily Mindfulness Habits. I help people live a more conscious, connected, and intentional life._______________________________________________________________________________________Connect with Kristen:https://www.instagram.com/kristenmanieri_/https://www.facebook.com/60MindfulMinuteshttps://www.kristenmanieri.com____________________________________________________________________________________This episode was edited by: Ruwan Basnayake___________________________________________________________________________________This Episode Is Sponsored by: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 (https://www.patron.com/findyourrare)
  1. INTERVIEW: Kristen Manieri and Better Daily Mindfulness
  2. INTERVIEW: Amy Grover and Catalyst Pharma
  3. INTERVIEW: Aaron Huey and Parenting Teens that Struggle
  4. INTERVIEW: Sam Thiara & Telling Your Story
  5. INTERVIEW: Amanda Griffith Atkins and Prader-Willi Syndrome

CONNECT

Let’s work together! Available for social media influencing & marketing.

FAVORITE ADVOCACY APPAREL

WHATEVER YOU ARE OWN.IT TEE

I love this shirt because I feel it can apply to so many people and their situations. Its bold and makes a statement!

SCRIPTED RARE. CROPPED CREW

I love this cropped crew neck because it raises awareness but also elevates your style. Its comfortable and looks great with leggings or my personal favorite – high waisted jeans

MOM WITH A MISSION FIERCE TEE

I often say that I am always on a mission when it comes to my children. This shirt is super cute and is my favorite print – camo!

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