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: Nikki McIntosh & Rare Mamas Because We Are Strong

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. ____________________________Connect with Nikki:E-Mail: nikki@raremamas.com @rare_mamas Rare MamasFor speaking, press, or partnerships contact: media@raremamas.comSupport the show (https://www.patron.com/findyourrare)
  1. INTERVIEW: Nikki McIntosh & Rare Mamas
  2. INTERVIEW: Linds K & USP9X
  3. INTERVIEW: Marcus, Jane & See Rare Run
  4. INTERVIEW: Ivorie Nicole & Bilateral Renal Agenesis
  5. INTERVIEW: Oliver Collins & FOP

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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