Rarely Familiar

Rarely Familiar

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Rarely Familiar

We are families. We are caregivers. We are parents to children with disabilities and rare medical complexities. We are Rarely Familiar. Three moms get together to learn, to relate, and to laugh (a lot) while we share each other’s unique family experiences of raising the rarest of the rare. Our goal is to unite, educate, inspire, and empower people living a rarely familiar life. We are so glad you’re here!

12/22/2024

#15: Emergency Planning from a Rural Perspective

In this episode of Rarely Familiar, Haley and Tram discuss the crucial topic of emergency planning for families with children who have disabilities and medical complexities. They are joined by Morgan Klatt, a parent from rural Embarrass, Minnesota, who shares her experiences and insights on creating an emergency care binder, working with local EMS teams, and preparing for emergencies in a rural setting. Morgan talks about the importance of having a go bag, backup medical supplies, and building relationships with local first responders. She also offers practical tips for other families facing similar challenges. Tune in to learn how to unite, inspire, educate, and empower caregivers and parents living a Rarely Familiar life. Key Takeaways/Action Items Visit your local EMS Start creating a printed binder in collaboration with your complex care physician (link to template to come) Get a backup Power Solution for your home Stock up on supplies Special thanks to:⁠ Morgan Klatt for sharing her expertise and continued camaraderie Eli Brunelle⁠⁠ for Intro and outro Music "New Love" Todd Piper Hauswirth at ⁠All-Good⁠ for logo and brand identity Emily Rodvold at Lift Creative for Web development

40 min
12/05/2024

#14: Danny's Dose Changes EMS Protocols

In this episode, Tram and Haley delve into the critical work of Danny's Dose, a non-profit founded by Darlene Shelton. The organization aims to reform EMS protocols for administering time-critical medications during life threatening emergencies. Featuring insights from Darlene and Andrea Nelson, the episode explores their personal stories, legislative achievements, and practical tips for preparedness. Listeners will learn about the successes and ongoing challenges in enhancing emergency care for patients with rare diseases. Did you know if you or your child is one of the 400,000 people (just in MN) across 13 different conditions that need life-saving meds in the case of emergency, your local EMT may not know how they are now able to use them to save you or your child’s life?! “Everybody needs to realize that at that moment, they [paramedics] have to decide between doing what they know in their heart is right and taking the chance that their entire livelihood could go straight down the drain. And that's a hard decision. So we really truly fight as much for every paramedic out there and really every medical director to make sure they're protected to allow the regulations within their service to be changed so that they are protected and they can do the right thing.” Key Takeaway: Step 1: If everybody that hears this message will get in your car and go meet your local EMS service this will bring much needed awareness for your condition for other conditions with this critical need. Step 2: If your state doesn’t have a regulatory change in place to administer these meds, Call Darlene–get started! Stay Connected with Rarely Familiar: Instagram ⁠⁠Facebook ⁠Rarely Familiar Website⁠ E-mail: info@rarelyfamiliar.com Special thanks to: ⁠Eli Brunelle⁠⁠ for Intro and outro Music "New Love" Todd Piper Hauswirth at ⁠All-Good⁠ for logo and brand identity

44 min
11/17/2024

#13: What is ABA Therapy?

Benefits, Controversies, and Success Stories of Applied Behavioral Analysis (ABA) Therapy. In this episode of Rarely Familiar, hosts Jen, Tram, and Haley delve into the intricacies of ABA therapy, featuring guests Obsa Mohamed, owner of Twin Cities Recovery Center (TCRC), and Claire Friedman, a board-certified behavior analyst. The episode covers personal stories, success stories of children benefiting from ABA therapy, and an in-depth look at the processes and principles behind ABA. The discussion also addresses common misconceptions, the importance of tailored treatment plans, and practical insights for parents seeking ABA therapy for their children. Whether you are a parent, educator, or someone interested in understanding ABA and its impact, this episode offers valuable information and heartfelt anecdotes. Tune in to learn more about supporting children with autism and other developmental challenges through ABA therapy. TCRC Website TCRC @tcrcmn IG TCRC Facebook Where to get an NeuroPsych Evaluation? Fraser List of Eligible Providers Credentials on Department of Human Services Website More Info on Neuropsych Evaluations on Department of Human Services Website Stay Connected with Rarely Familiar: Instagram ⁠⁠Facebook⁠ Rarely Familiar Website⁠ E-mail: info@rarelyfamiliar.com Special thanks to:⁠ Eli Brunelle⁠⁠ for Intro and outro Music "New Love" Todd Piper Hauswirth at ⁠All-Good⁠ for logo and brand identity

48 min
11/01/2024

#12: The Path to an Inclusive Playground

In this episode of Rarely Familiar, Betsy Julian, a teacher from Glen Lake Elementary shares the inspiring story of how a simple idea to add an accessible swing evolved into a massive project to build an inclusive playground. Initially aiming to raise $35,000, the project quickly grew to a $1 million effort, driven by the dedication and thoughtful planning of Betsy's students. The children considered various disabilities and requirements, ensuring the playground would be inclusive for everyone. Their hard work included grassroots fundraising, media involvement, and thoughtful design, resulting in an $860,000 playground that caters to all children, regardless of their physical abilities. The episode highlights the importance of inclusive play and the transformative power of community-driven projects. This story gained national media attention from the CBS Sunday Morning with Steve Hartman to the Kelly Clarkson show. Link to all info and media for the Glen Lake Accessible Playground Project Stay Connected with Rarely Familiar: Instagram⁠⁠ Facebook⁠ Rarely Familiar Website⁠ E-mail: info@rarelyfamiliar.com Special thanks to: ⁠Eli Brunelle⁠⁠ for Intro and outro Music "New Love" Todd Piper Hauswirth at ⁠All-Good⁠ for logo and brand identity

42 min
10/06/2024

#11: Adult Changing Stations become Law in MN

In this episode of Rarely Familiar, Haley, alongside friends Tram and Jen delve into the transformative journey of turning citizen advocacy into enacted legislation. They are joined by guest Sarah St. Louis, who shares her inspiring experience of drafting and helping pass a bill into law mandating adult-sized changing tables in certain public spaces in Minnesota. The discussion highlights the importance of community involvement, telling personal stories, and legislative strategies to bring attention to often overlooked needs. Throughout the conversation, they emphasize perseverance and coalition building as critical components for enacting social change, demonstrating how individuals can start with a simple idea and transform it into impactful, inclusive legislation. Resources: How a bill becomes a law in MN https://www.leg.mn.gov/leg/howbill Partners in Policymaking https://www.disability.state.mn.us/2022/04/04/apply-for-partners-in-policymaking-class/ Find out who your Representative is (so easy, just plug in your zip code): https://www.gis.lcc.mn.gov/iMaps/districts/ Changing Spaces Campaign: https://www.changingspacescampaign.com/ Minnesota Changing Spaces Facebook Page https://www.facebook.com/profile.php?id=100089112933061 Stay Connected with Rarely Familiar: Instagram⁠⁠ Facebook⁠ Rarely Familiar Website⁠ E-mail: info@rarelyfamiliar.com Special thanks to: ⁠Eli Brunelle⁠⁠ for Intro and outro Music "New Love" Todd Piper Hauswirth at ⁠All-Good⁠ for logo and RF brand identity

40 min
10/04/2024

#10: Hope is Powerful Medicine

Empowering Families: Inside HopeKids Non-profit Organization and their fun programming for the entire family! On this episode of Rarely Familiar, Tram and her friends Jen and Haley explore the nonprofit organization HopeKids. They discuss personal experiences with their children's schooling challenges and the importance of HopeKids' support. Special guests Brianna Watke and Ariel Lindahl from HopeKids share insights into their roles, the organization's mission, and the broad definition of life-threatening medical conditions. The conversation highlights the variety of events HopeKids organizes, the importance of community, and personal stories of joy and connection. Additionally, the hosts emphasize the organization's positive impact on families dealing with rare medical complexities. Resources: Hope Kids Stay Connected with Rarely Familiar: Instagram⁠ ⁠Facebook⁠ Rarely Familiar Website⁠ E-mail: info@rarelyfamiliar.com Special thanks to: ⁠Eli Brunelle⁠⁠ for Intro and outro Music "New Love" Todd Piper Hauswirth at ⁠All-Good⁠ for Rarley Familiar brand identity

37 min
09/07/2024

#9: ¡Bienvenido a México!

Yes you CAN travel internationally, here’s proof. In this fun episode of Rarely Familiar, Haley is in Mexico and connects with her fellow co-hosts, Tram and Jen, who are stuck in chilly Minnesota, to share her recent trip to visit her mother in Puerto Vallarta, with her medically complex son, Felix. Haley offers practical and real life advice on traveling solo with her son and the importance and challenges of packing and planning for an International trip and utilizing the support systems available such as TSA Cares, wheelchair assistance, and other accessibility services to ease the travel process. The trio discusses practical tips like using medical packing lists, medical documentation notes, and Apple Air Tags to keep track of important items. The episode emphasizes that, despite the stress, the effort to travel is rewarded by enriching experiences and family connections. Stay Connected with Rarely Familiar: Instagram⁠⁠ Facebook⁠ Rarely Familiar Website⁠ E-mail: info@rarelyfamiliar.com Special thanks to: ⁠Eli Brunelle⁠⁠ for Intro and outro Music "New Love" and Todd Piper Hauswirth at ⁠All-Good⁠ for logo and brand identity Links and Resources mentioned in this episode TSA Cares Apple AirTag Airline Passengers with Disabilities Bill of Rights (PDF version)

22 min
09/07/2024

#8: What is Palliative Care?

Not clear on what Palliative care is all about? You’re not alone. Get familiar with Dannell, a palliative care family advocate and clinician educator. In this heartfelt exchange, Rarely Familiar co- hosts Tram, Haley, and Jen, converse with Dannell Shu, a mother and palliative care advocate, who shares her profound knowledge and experience in palliative and hospice care. Dannell shares her personal journey with palliative and hospice care for her son Levi, who was born with severe brain damage and other medical challenges. The conversation covers the differences between palliative care and hospice care, the team-based approach involved, the importance of advance care directives, and the concept of concurrent care available through the Affordable Care Act. Dannell highlights her passage from a mother navigating her son’s medical complexities and his death; to becoming a palliative care advocate and educator. The episode aims to shed light on these critical topics, breaking down intimidating barriers for parents dealing with similar situations. Stay Connected with Rarely Familiar: Instagram⁠⁠ Facebook ⁠Rarely Familiar Website ⁠E-mail: info@rarelyfamiliar.com Special thanks to: ⁠Eli Brunelle⁠⁠ for Intro and outro Music "New Love" and Todd Piper Hauswirth at ⁠All-Good⁠ for logo and brand identity Links and Resources mentioned in this episode RedBird Dannell Shu’s website Want to hear more? Podcast with Dannell Shu and Palliative Nurse What you should know about palliative care one pager English & Spanish https://getpalliativecare.org/handouts-for-patients-and-families/

44 min

5

out of 5

4 Ratings

We are families. We are caregivers. We are parents to children with disabilities and rare medical complexities. We are Rarely Familiar. Three moms get together to learn, to relate, and to laugh (a lot) while we share each other’s unique family experiences of raising the rarest of the rare. Our goal is to unite, educate, inspire, and empower people living a rarely familiar life. We are so glad you’re here!

Creator

Rarely Familiar
Years Active

2K
Episodes

15
Rating

Clean
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Rarely Familiar