Two Rare Mama Bears, a Cure CMD Podcast - where we discuss all things Congenital Muscular Dystrophy and Rare Disease...All subtypes, ages, abilities and topics with the intent to connect the CMD community. 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. Hosts: Megan Meyer and Matty Manley.
Just like November's #GivingTuesday, #GivingTuesdayNow is not exclusively a fundraising day. It's an opportunity for people around the world -- including the Cure CMD community -- to stand together for the causes they believe in. Especially now, we must stay connected! In this episode, we are joined by CMD community member, Mark Beare, who talks about standing together via fundraisers to support our mission. Mark talks about his own experiences fundraising shortly after Bella, his adorable daughter, was diagnosed with LAMA2 CMD. #beareitforbella #CureCMD
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29 Apr 2020
053 - STABLE Accounts and COVID-19 stimulus checks
ABLE Accounts give people with disabilities more independence and financial security by providing tax-free savings plan for disability-related expenses without losing needs-based benefits. We are joined by Nick Hancart, Public Affairs Manager for STABLE for Ohio Treasurer of State. Nick shares with us how individuals can seek out their own state’s ABLE Account, or utilize Ohio’s STABLE Account, which has nationwide enrollment available. Nick also tells us how individuals can utilize their COVID-19 stimulus check into an ABLE/STABLE Account and not have it affect their needs-based financial aid. #STABLEAccount Find more information at www.stableaccount.com
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13 Apr 2020
052 - I Stay Home For Rare
Are you living with a rare disease or a parent/caregiver to someone who is? I Stay Home For Rare™ is a campaign and fund for those standing with us in this cause. Levi Gershkowitz joins us to share how through this new platform, together we are raising awareness and funds to help people in this time of heightened need. We stay home in solidarity with those protecting the lives of children, family members, and friends living with rare diseases during the COVID-19 pandemic. I Stay Home For Rare has funding to give grants to those in need during COVID-19. Apply and let them know your story and your needs https://www.istayhomeforrare.org/apply #istayhomeforrare #StoryAsMedicine
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22 Mar 2020
051 - Only the vulnerable will be at risk, your "only" is my everything
Matty & Megan do a check-in episode after the first week of COVID-19 quarantine at home…. Including a comparison to how this experience is similar to winter for medical complex families, a discussion how we’re handling all the things, and tips for maintaining sanity and caring for mental health while also attempting to safeguard our families’ physical health. During a time we’ve all heard the news say only the vulnerable will be at risk during this pandemic, we take time for a realization that “only” is everything for some families….
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