“TWO RARE MAMA BEARS” PODCAST LAUNCHES
TO FILL A UNIQUE NEED FOR RARE DISEASE COMMUNITY

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

Matty Manley and Megan Meyer were in Atlanta-Hartsfield Airport at the beginning of March, delayed from one of this 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).

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

“[Matty] looked at me like I had two heads,” says Megan.

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

Only two months later, on May 1—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 are launching their own podcast, “Two Rare Mama Bears.” The goal of the podcast is to broaden and deepen the connections among people affected by CMD and by rare diseases in general, and to move the needle toward treatment and a cure for 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.

“At one point, our outstanding medical bills added up to $35,000,” says Megan. “We sold our house and bought a smaller starter home.” Having learned all about Medicaid and other resources for cases such as her daughter’s, the Meyers now help other families navigate the complex processes of medical bills, insurance, and public resources.

For Matty, her family was constantly doing calculations: “[My husband] Luke was working his regular job and two side jobs, and I was working a part-time job. We were always adding up how many hours we needed to work in order to finish paying one bill and start paying the next.”

“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.”

Yet 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. On one occasion, when their families were spending time together, Luke happened to notice that his friends’ child, Lilly, was getting tired from walking a long distance—because, while Lilly is still ambulatory, her condition makes it so that long distances tire out her muscles, and she sometimes uses a wheelchair.

“Without Justin or I even saying anything, Luke just scooped Lilly up and started carrying her,” explained Megan. “Very few people would understand to do that, but he knew.”

Likewise, with their combined experiences, the “Two Rare Mama Bears” will be able to offer not only nuts-and-bolts and practical advice of navigating rare disease, interviews with researchers and experts, and interviews with the community and more—they’ll offer a reminder that although people in the community are rare, they’re never alone.

“Two Rare Mama Bears” launches at www.curecmd.org/podcast on May 1, 2018 and will have new episodes twice monthly.

For more information and to contact Matty Manley, Megan Meyer, or Cure CMD, please see below.

Matty Manley:
mathea.manley@curecmd.org

Megan Meyer:
megan.meyer@curecmd.org

Cure CMD:
Terry Selucky, Press Relations
(323) 552-9673
terry.selucky@curecmd.org

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.