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: Amanda Griffith Atkins and Prader-Willi Syndrome Because We Are Strong

Hey peeps, this week I am so excited to sit down and chat with Amanda, not only is she a member of this RARE. herd but she is also a therapist. Meet Amanda:I'm a mom to a 12-year old with Prader-Willi Syndrome as well as a licensed marriage and family therapist.My son got his diagnosis when he was 7 weeks old. It turned my life upside down and I quickly learned that there wasn't much space for the "hard" feelings related to parenting a child with a disability. It's become a bit of a life mission to give parents space to talk about the hardship, while also recognizing that they love their child so much. Pain and love and exist at the same time!____________________________Connect with Amanda:@amanda.griffith.atkinswww.amandaatkinschicago.com___________________________This episodes was 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: Amanda Griffith Atkins and Prader-Willi Syndrome
  2. INTERVIEW: Riley and Spina Bifida
  3. INTERVIEW: Heather Hutchinson and Holding On by Letting Go
  4. Those RARE. Girls: Thankfully RARE. 2021
  5. INTERVIEW: Christine Rich & Chronic

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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You’re not alone. You have a herd behind you.