Two Rare Mama Bears

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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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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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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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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Clinical research studies occurring at National Institutes of Health (NIH) utilize people as volunteers and collect data as a means of developing new treats and medications for diseases and conditions. Because there are strict rules of clinical trials, visits to NIH often come with questions regarding what to expect in the overall process. In this episode we chatted with Kierra Sunris, a feisty 15-year-old from North Carolina, who has multiple NIH trips under her belt. In her own words, she is by no means an expert - but did offer some pro tips and key points to keep in mind, especially if you’re visiting NIH for the first time.

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Drug Development is the process by which potential treatments discovered in a research laboratory become approved treatments for affected individuals. In this episode, Rachel Alvarez (Cure CMD Executive Director) explores with us why the process is long and expensive, and never a guaranteed result in bringing a treatment to market. Understandably, the CMD community is eager to see this process accelerated, especially in light of recent press about treatments for other neuromuscular conditions. Rachel is authoring a series of blog posts further expanding on the topic, the first in a series of four posts can be found here: https://bit.ly/2H2KLCg

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“Hardships often prepare ordinary people for an extraordinary destiny”, a quote by C.S. Lewis that resonated with Cristol Barrett O’Loughlin after witnessing the caregiving her family provided while spending decades living with the diagnosis and eventual passing of three brothers with Mucopolysaccharidosis (MPS). As Founder & CEO of ANGEL AID CARES, Cristol is fiercely passionate about providing social, emotional, physical and financial relief to mothers of children with rare disease. ANGEL AID sources Research, Relief and Inspiration for mothers of children with rare diseases through services and strategies to build resilience, community, and promote self-care.

Cristol invites you to connect with her on on Facebook, Instagram & Twitter: angelaidcares or via email at: [email protected]

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Rasheera Dopson joins us to discuss efforts she has taken to chronicle her life with multiple co-existing rare diseases/chronic health conditions, and the intersection of also identifying as an individual with a disability and an underrepresented minority. In Rasheera’s blog, Beauty with a Twist, she explores all these identities to reach out and connect with others and encourages all of us to let our differences change the world. In addition to blogging, Rasheera also speaks publicly, will soon publish a book, and is starting The Dopson Foundation, for women and girls with disabilities.

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“If a teacher and a nurse combined into a career” - that’s how Caitlin Parker quickly describes her career if she only had 5 seconds to share with you her passion for Child Life mission and vision. Caitlin joined us for episode 039, The White Space, and is with us again to help families like ours, like hers, learn more about family-centered care and how we can all utilize that care better for in-patient and outpatient visits.

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Jennifer Siedman, Patient Disease Outreach Coordinator at Courageous Parents Network, joins us to talk on the topic of: Anticipatory Grief - grief that occurs before death or grief that comes with feeling or confronting emotions in advance of an event (loved one’s birthday or anniversary of death). Jennifer and her family know this all too well - in 2014 they lost their teenage son, Ben, to Sanfilippo Syndrome. Since that time, Jennifer has devoted herself to support, guide and strengthen families as they care for a seriously ill child. Jennifer welcomes families in similar situations to reach out to her at: [email protected] Courageous Parents Network can be found online at: www.courageousparentsnetwork.org/

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