Starting a Rare Disease Podcast

Like many so-crazy-it-just-might-work ideas, “Two Rare Mama Bears” podcast was borne out of sleep deprivation.

Matty Manley and Megan Meyer were in Atlanta-Hartsfield Airport at the beginning of March 2018, delayed from one of the season’s many turbulent Nor’easters. Matty hadn’t slept for 24 hours, and they still had one more leg to go before they arrived to their homes in Washington state (Matty) and Iowa (Megan). They’d had a long week in Washington DC in the final days of February, which are internationally recognized as Rare Disease Week, spending most of their waking hours meeting members of Congress, advocating for people with rare disease and specifically, congenital muscular dystrophy (CMD). During the week, they ended each of their social media posts with #LeaveNoStoneUnturned or #FailureIsNotAnOption.

Physically and mentally exhausted and looking ahead to hours listening to their favorite podcasts, Megan wondered if they could host their own show about rare disease and CMD.

“[Matty] looked at me like I was crazy,” says Megan.

“But then as soon as I processed the idea, I was totally on board!” interjects Matty.

Only two months later, with the help of their tech-savvy husbands Luke (Manley) and Justin (Meyer), and the support of patient advocacy organization Cure CMD, Matty and Megan launched their own podcast, “Two Rare Mama Bears.” The goal of the podcast is to deep dive into issues surrounding caregiving for rare disease individuals, help our community figure out when to engage their mama/dada bear instinct and when to let it lie, and to work to create ripples of change toward moving the needle on the mission of Cure CMD.

Both Matty and Megan have a young child affected by CMD, subtype SEPN1. Their stories will be familiar to almost everyone who has been diagnosed, or loves someone who has been diagnosed, with a rare disease: The months-long (or years-long) diagnostic journey. The assurance from a medical professional that everything is fine—and the gut feeling that you know something more is going on. The endless string of doctors. The misdiagnosis. The financial hardship, and the ups and downs.

Over the years, Matty and Megan have become advocates, experts, and supporters of others who go through the experience of a rare diagnosis. They understand the big picture, like the need to “find your tribe,” as well as the nitty-gritty, such as finding out how to afford the sky-high bills that come with rare medical issues.

This is different for each of us.

For 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. I love seeing my kids get involved in advocacy and learning how to advocate for themselves in whatever areas they need, and them getting used to talking about their own stories with their peers and adults.

For 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. For us as a pair – doing the podcast gives us the opportunity to have frequent conversations with each other, and we now consider each other best friends…. so, it keeps us connected, probably more so than we otherwise would have.  It has expanded our network exponentially and opened doors in the rare disease community for greater collaboration. Our families have traveled to rare disease gatherings and events and connected with other rare disease warriors – these friendships are priceless.

“There’s a huge lack of knowledge being communicated about what resources are out there and how to go about accessing them… There isn’t someone to guide you to all the resources you qualify for.”

Finding that support system is absolutely a necessary part of the journey. “You have to find your tribe,” says Megan, and Matty adds: “Other people who know what you’re going through.” For Matty and Megan, they’ve found that in each other.

• 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 specialities that collaborate together to reach your health goals.

• Find a good editor
• Pick a niche – sometimes being too broad can create a sense of overwhelm
• Learn ways to create efficiencies
• Build a social media following before you launch – you’ll find it will help you when you launch
• Learn that once you’re into a spotlight (yes, even podcasting is into a spotlight), that you may need to be comfortable being uncomfortable…and that not everybody will see eye-to-eye with you

The “Two Rare Mama Bears” offers not only nuts-and-bolts and practical advice of navigating rare disease, interviews with researchers and experts, and interviews with the community and more—we offer a reminder that although people in the community are rare, they’re never alone…. After all, we’re leaving no stone unturned, because failure is not an option.

About Two Rare Mama Bears

“Two Rare Mama Bears” podcast has twice monthly episodes and can be found on most major podcast platforms: Apple podcast, Google Play, Stitcher, Spotify, SoundCloud, and iHeartRadio podcasts. Stream online at www.curecmd.org/podcast. Find Two Rare Mama Bears on social media: Facebook, Instagram & Twitter @2raremamabears

Contact: podcast@curecmd.org

About Cure CMD

Cure CMD was founded in 2008 to advance research for treatments and a cure for congenital muscular dystrophy (CMD and, through engagement and support of the CMD community, to also improve the lives of those living with CMD. To date, the organization has funded more than $2 million in research, launched an international patient registry with more than 2,500 registrants, assisted with genetic diagnosis, and connected more than 2,000 affected individuals and their families to a supportive, helpful community.  Visit  www.curecmd.org for more information.