Two Rare Mama Bears Podcast

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Hello friends! If you are subscribed to my YouTube channel you would know that I recently started a BRAND NEW series! I have been reaching out to Podcasts that talk about awareness, disability, rare diseases, and more. I wanted to showcase these awesome Podcasts so that other families with special needs can find them!

Next up on my Inspiring Podcast series is a couple of ladies from Two Rare Mama Bears. They combined their love for Congenital Muscular Dystrophy Advocacy and Rare Diseases and are sharing it with the world. These two ladies are definitely inspiring and I am excited to share their interview with my readers!

Can you tell me a bit about yourselves?

Matty – Pacific Northwest mom residing in Spokane, WA, podcaster, mama bear, and school volunteer.

Megan – Midwest mom residing in Iowa, podcaster, mama bear, higher education professional, Girl Scout {Brownie} leader, and foodie.

What do you all like to do for fun?

Matty – I love to craft, sew, and crochet–I also love creating things. I love going out dancing with my husband.

Megan – I like to try out and make various foods, I love to travel, and I’m starting to become a cider connoisseur.

How did y’all meet?

In January 2016, we first met in an online support group for the specific sub-type of Congenital Muscular Dystrophy (CMD) that each of us have a child affected by. We met face-to-face in July 2017 in Arlington, VA at a conference our patient advocacy group, Cure CMD, hosted. While in the D.C. area we did tourist activities together and started to bond further and stayed in touch.

What is the story behind Two Rare Mama Bears?

While participating in Rare Disease Week on Capitol Hill, the idea of a podcast was born with the intent to connect the CMD community. Our experiences during Rare Disease Week inspired us to do more and we realized a skill we could put to use was talking to others and making connections.

The name of the podcast is in obvious reference to the use of “mama bear” describing a special needs mom. Topics on our podcast are to talk all things CMD and rare disease – hence making us “rare mama bears”.

This podcast is about bringing together affected individuals, their family, researchers, clinicians, industry, and policy-makers to have conversations with the goal of moving the needle on the mission of Cure CMD.

Can you tell us a bit about Congenital Muscular Dystrophy?

CMD is one of over 7,000 rare diseases of which there is no cure. CMD is a group of neuromuscular disorders originating at or soon after birth in most who are affected, but can also present later in life. CMD causes life threatening symptoms that affect breathing, cardiac function, nutrition, and scoliosis.

What is your advice to parents with children newly diagnosed with CMD?

Get connected to the patient community early on, finding others who understand the shoes you are walking in will be one of the best items in your toolkit! There are a number of online support groups to connect.

Establish your care team and ensure they communicate as a multi-disciplinary team! You want physicians of the various specialties that collaborate together to reach your health goals.

Why is advocacy so important to you?

Matty – Being a special needs parent is the greatest gift I didn’t know I needed. In becoming an advocate for our community I have found my voice and my confidence.  

  • Cure CMD blog story from January 2018 before heading to Washington D.C. for 2018 Rare Disease Week on Capitol Hill

Megan – I am motivated to be a voice for affected individuals, like my daughter. I enjoy being a change maker – so I don’t mind letting my opinion be heard and pushing for action.

Is there something I should’ve asked but didn’t?

Matty likes to say in relation to the podcast and advocacy that “failure is not an option”, whereas Megan likes to say “we will leave no stone unturned”. You might say that both phrases have become our own personal taglines/hashtags.

Where can my readers find your podcasts?

Listen to this podcast on Apple podcast, Google Play, SoundCloud, or Stitcher. Stream online at www.curecmd.org/podcast

You can find these two lovely ladies at:

Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

2 Rare Mama Bears Podcast Interivew #specialneeds #inspiring #podcast

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