by 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!
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Publishing Since
8/28/2024
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May 22, 2026
<p>In this episode of Rarely Familiar, cohosts Haley, Jen and Tram chat with Sophie Iverson, a lifelong self-advocate with a master’s degree in law from Hamline University and a degree in political science from St. Catherine University. She is the founder of Access 2 Advocacy, where she uses her lived experience and passion for storytelling to help others build confidence, develop advocacy skills, and share their own stories for self-advocacy.</p><p><br></p><p>For full Show Post and Show Notes visit <a href="https://www.rarelyfamiliar.com/podcast/access-2-advocacy" target="_blank" rel="noopener noreferer">Episode 31</a> on our website.</p><p><br></p><p><strong>Key Takeaways:</strong></p><ul><li><p><strong>Empathy Meets Expertise:</strong> Sophie’s lived experiences and professional acumen uniquely position her to help families navigate the complex world of disability advocacy.</p></li><li><p><strong>Breaking Down Barriers:</strong> Whether it’s guiding legislative advocacy or attending school meetings, Sophie aids families in understanding and asserting their rights.</p></li><li><p><strong>Community and Support:</strong> At the heart of advocacy is recognizing the power of asking for help. Opening channels of communication with peers and professionals is crucial.</p></li><li><p><strong>Practical Tips:</strong> Sophie emphasizes the importance of preparation and knowledge. From learning specific county processes to effective communication during IEP meetings, small details can have significant impacts.</p></li><li><p><strong>A Call to Action:</strong> To all caregivers feeling overwhelmed, Sophie’s message is clear: You’re not alone in this journey. Reach out, connect, and let advocacy transform from a daunting task into a manageable pathway.</p></li></ul><p><br></p><p><strong>Resources & Links</strong>:</p><p><a href="https://www.access2advocacy.com/"><u>Access 2 Advocacy </u></a></p><p><a href="https://www.ada.gov/"><u> Americans with Disabilities Act (ADA)</u></a> </p><p><a href="https://mohrmn.org/advocacy/day-at-the-capitol.html"><u>Disability Day at the State Capital</u></a> </p><p><a href="https://mn.gov/dhs/people-we-serve/adults/health-care/health-care-programs/programs-and-services/medical-assistance.jsp"><u>Medical Assistance/Medicaid </u></a></p><p><a href="https://disabilityhubmn.org"><u>Disability Hub MN</u></a> </p><p> <a href="https://mn.gov/dhs/"><u>Department of Human Services (DHS)</u></a> </p><p><a href="https://hcopub.dhs.state.mn.us/epm/home.htm"><u>Department of Human Services Eligibility Policy Manual or EPM </u></a><br><a href="https://en.wikipedia.org/wiki/Individualized_Education_Program"><u>Individualized Educational Plan</u></a></p><p><br></p><p><strong>Special Thanks to:</strong></p><p><a href="https://www.linkedin.com/in/sophieiverson/"><u>Sophie Iverson</u></a>, founder of <a href="https://www.access2advocacy.com/about"><u>Access 2 Advocacy</u></a></p><p><a href="about:blank"><u>Eli Brunelle</u></a> for Intro and outro Music "New Love" Todd Piper Hauswirth at<a href="https://all-good.com/"> <u>All-Good</u></a> for logo and brand identity Emily Rodvold at <a href="https://lift-creative.com/"><u>https://lift-creative.com/</u></a> for Web Design and Development</p><p><a href="https://www.daniellecjohnson.com/"><u>Danielle Johnson</u></a>, Intern for Rarely Familiar</p><p><br></p>
April 18, 2026
<p><strong>“We repeat what we don't repair. If he can't learn the way we teach, then we have to teach the way he learns.” —Andrea Lawson</strong></p><p><br /></p><p><strong>You Are Not Alone. Even When It Feels Like You Are.</strong></p><p>Here is something nobody tells you when you bring a tiny human home from the hospital with special healthcare needs: there is no manual. There is also no manual for what happens when that tiny human has needs the world hasn't quite figured out how to meet yet. You just show up. And then you show up again. Sometimes after five hours of sleep. Sometimes after a shower that felt like a spiritual event. This is the honest, unglamorous, occasionally transcendent reality of raising a child with a rare condition. <br /></p><p><strong>The Board of Directors Nobody Signed Up For</strong></p><p>This is how it works: not in dramatic movie moments, but in small hinges. A therapist who pauses and asks how are you doing? A geneticist who fights for you behind the scenes. A stranger at a meet-and-greet who says, have you heard of this program?</p><p>“Build your board of directors”, Andrea says. Find your ride-or-dies. Think of it like a company — who do you want in your corner? Be the CEO of your child’s team.</p><p><br /></p><p><strong>The Things That Should Be Said Out Loud</strong></p><p>Parents of children with complex needs are quietly, regularly pushed out of jobs — or passed over, or penalized — because employers view the reality of their lives as a liability. Too many appointments. Too much unpredictability.</p><p>These are not complaints, but facts about a system that was not built with these families in mind. </p><p>Andrea is sitting in the rooms where those decisions get made. She is one of the few…and that needs to change!</p><p><br /></p><p><strong>Sitting at the Table</strong></p><p>Andrea serves on multiple state advisory councils. She is intentional about taking up space — lifting perspectives that might otherwise stay invisible, making sure that people who live experiences like hers are part of the conversation when systems are built.</p><p>This is not radical. It is common sense. And yet.</p><p>We repeat what we don't repair, she says. Policies shaped without input from the communities they affect just keep sending everyone back to the drawing board. Parents' voices aren't a nice-to-have. They are the whole point.</p><p><br /></p><p><strong>What She Wants You to Know/Takeaway</strong></p><p>Take time to process. Be present, even when the road isn't straight. Celebrate in the hallway. Build your team. Trust your gut. You carried this child. You know them better than any chart does. And find community. Because the loneliness of this path is real, but so is the warmth of the people who've walked it.</p><p><br /></p><p><strong>Resources & Links</strong>:<br /><a href="https://www.youtube.com/watch?v=OEFTK_sWuks" rel="ugc noopener noreferrer" target="_blank">Thriving Together: Navigating Health care systems with Confidence</a> PACER Center webinar with Andrea, Haley and Dr. Tori Bahr. </p><p><a href="https://helpmegrowmn.org/HMG/HelpfulRes/Articles/WhatInfantToddlerInterv/index.html#SkipNavigation" rel="ugc noopener noreferrer" target="_blank">Help me Grow</a> Birth to 3 program</p><p><a href="https://lend.umn.edu/" rel="ugc noopener noreferrer" target="_blank">The Lend Project </a> Leadership Education in Neurodevelopmental Disorders</p><p><a href="https://midb.umn.edu/" rel="ugc noopener noreferrer" target="_blank">The Masonic Institute for the Developing Brain</a></p><p><a href="https://ici.umn.edu/" rel="ugc noopener noreferrer" target="_blank">The Institute on Community Integration</a></p><p><a href="https://education.mn.gov/mde/fam/ecse/" rel="ugc noopener noreferrer" target="_blank">ECSE</a> Early Childhood Special Education</p><p><a href="https://dcyf.mn.gov/partners-and-providers/child-care-and-early-learning/districts-schools-and-head-start/ECFE" rel="ugc noopener noreferrer" target="_blank">ECFE </a>Early Childhood Family Education</p><p><a href="https://www.youtube.com/watch?v=7dbXPw11AE4" rel="ugc noopener noreferrer" target="_blank">Melanie Demore: You gotta put one foot in front of the other and lead with love</a> Careful, it’s an earworm!</p><p><br /></p><p><br /><br /><a href="https://www.linkedin.com/in/andrealawson6/" rel="ugc noopener noreferrer" target="_blank">Andrea Lawson</a></p><p>Eli Brunelle for Intro and outro Music "New Love"</p><p>Todd Piper Hauswirth at<a href="https://all-good.com/" rel="ugc noopener noreferrer" target="_blank"> All-Good</a> for logo and brand identity</p><p>Emily Rodvold at<a href="https://lift-creative.com/" rel="ugc noopener noreferrer" target="_blank"> https://lift-creative.com/</a> for Web Design and Development</p><p><a href="https://www.daniellecjohnson.com/" rel="ugc noopener noreferrer" target="_blank">Danielle Johnson</a>, Intern for Rarely Familiar</p>
March 20, 2026
<p>Anne is the proud mother of Leo, a spirited nine-year-old who faces the challenges of Pompe Disease with bravery and charm. Despite initial concerns about his future, Leo has grown into a sports-loving, energetic little boy thanks to the love and perseverance of his family. Anne's experience with Leo's condition sparked a passion that led her to become an advocate for families affected by rare diseases.</p><p>For those unfamiliar, Pompe Disease is a rare genetic disorder that affects the body's ability to break down glycogen, impacting crucial organs and muscles. There are two forms—infantile and late onset—each presenting its own set of challenges. Anne, alongside her husband, has been relentless in exploring various treatments and diets to give Leo the best quality of life possible. Their determination even led to the creation of the Pompe Warrior Foundation, proving that a little bit of "Chicago attitude" can go a long way.</p><p>Fueled by a desire to help other families facing similar battles, Anne and her community rallied to establish the Pompe Warrior Foundation. With support from researchers like Dr. Dominic "Dom" D'Agostino and donations from generous contributors, the foundation is pushing the envelope in researching dietary approaches combined with enzyme replacement therapy. Their efforts are propelling policy and practice changes that could transform lives.</p><p>Anne reminds us all that families living with rare diseases often straddle two worlds: the everyday and the medical. The support from the community, whether through thoughtful gestures like doing laundry or simply acknowledging their journey, makes a world of difference. By sharing her story, Anne invites more people to understand the dual reality of rare disease families and to offer genuine support.</p><p>As we continue to raise awareness and foster understanding, Anne's story offers a powerful message to the rare disease community: You're never alone. The bonds formed with fellow parents, researchers, and advocates create a safety net of understanding and solidarity. Together, anything is possible.</p><p>In closing, we extend our deepest gratitude to Anne St. Martin for sharing her story and her work with the Pompe Warrior Foundation. May her story inspire us to act, support, and create a world where rare disease families feel seen and heard. Thank you for joining us on this enlightening journey.</p><p>Remember to wear your stripes and show your support as Rare Disease Month comes to a close, and until next time, keep spreading positivity and awareness!</p><p>For those interested in contributing to the Pompe Warrior Foundation or learning more, links and resources are available through the Rarely Familiar podcast or directly through the foundation’s outreach channels. As Anne poignantly observes, <strong>"We live in grief and joy at the same time," </strong>a sentiment that resonates deeply with anyone touched by the challenges of rare diseases.</p><p><br></p><p><u><strong>RESOURCES AND LINKS</strong></u></p><p><a href="https://www.pompewarriorfoundation.com/"><u>Pompe Warrior Foundation</u></a> </p><p> <a href="https://www.roche.com/media/releases/med-cor-2019-12-17b"><u>Sparks Therapeutics</u></a> </p><p><a href="https://account.allinahealth.org/servicelines/815"><u>Courage Kenny Rehabilitation Institute</u></a> </p><p><a href="https://hopekids.org/"><u>HopeKids</u></a> </p><p><br></p><p><strong>Special thanks to:</strong></p><p><a href="https://www.linkedin.com/in/anne-st-martin-14a796276/"><u>Anne St. Martin</u></a> for sharing their story<u></u> and the <a href="https://www.pompewarriorfoundation.com/"><u>Pompe Warrior Foundation</u></a><u></u></p><p><u>Eli Brunelle</u> for Intro and outro Music "New Love"</p><p>Todd Piper Hauswirth at<a href="https://all-good.com/"><u> All-Good</u></a> for logo and brand identity</p><p>Emily Rodvold at<a href="https://lift-creative.com/"> <u>https://lift-creative.com/</u></a> for Web Design and Development</p><p><a href="https://www.daniellecjohnson.com/"><u>Danielle Johnson</u></a>, Intern for Rarely Familiar</p><p><br></p><p><strong>Stay Connected with Rarely Familiar:</strong><a href="https://www.instagram.com/rarelyfamiliar"><u></u></a></p><p><a href="https://www.instagram.com/rarelyfamiliar"><u>Instagram</u></a></p><p><a href="https://www.instagram.com/rarelyfamiliar"><u></u></a><a href="https://www.facebook.com/RarelyFamiliar"><u>Facebook</u></a></p><p><a href="https://www.facebook.com/RarelyFamiliar"><u></u></a><a href="https://www.rarelyfamiliar.com"><u>Rarely Familiar Website</u></a></p><p>E-mail: info@rarelyfamiliar.com</p>
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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!
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