Parents As Rare - Last 12 Episodes (click photos to listen)
PARENTS AS RARE
Kimberly Matias & Michelle Hurty
Exploring Palliative Care
Kimberly Matias, a social worker, & Michelle Hurty, a physician assistant, join me for an exploratory conversation about palliative care to dispel the myths that exist & provide information to my listeners. They've become an integral part of my care team & have helped me navigate unchartered waters while dissuading the prototypical beliefs, fears, & misconceptions about palliative care.
January 20, 2023
PARENTS AS RARE
Robin Powers
Challenging The Status Quo
Robin Powers is a mother who has a rare disease and she's raising a son who has a rare disease. She's a single parent going to school, yet she still manages to knock out important advocacy-related work and projects, all while supporting others. We discuss navigating parenting as parents with rare diseases.
December 21, 2022
PARENTS AS RARE
Elizabeth Wood
Meeting My MELAS Mito Friend
I met Elizabeth Wood, a fellow mito patient, through connections at Mito Action. Elizabeth was the first person from the mito and rare disease communities that I was fortunate enough to meet in person. I was grateful to meet with her, discussing being rare disease parents and mitochondrial disease. I learned a lot from our conversation and reuniting to record this podcast was just as helpful.
November 16 2022
PARENTS AS RARE
Dr. Tim McLerran - Live at The Global Genes Patient Advocacy Summit
Tim is the Co-Founder and Head of Product at Medical Intelligence One, where the mission is to care for patients based on their own deeply informative data with wisdom derived from a partnership between human and machine intelligence trained on data from billions of other humans and all of the world’s medical knowledge. Tim is also launching and hosting a show called Diagnostic Odysseys, where they dive into patient stories in hopes of shortening the diagnostic odysseys patients endure.
October 20, 2022
PARENTS AS RARE
Tara Zier - Stiff Person Syndrome Research Foundation
and Finding Your Purpose
Tara is a rare disease patient, mother and the Founder & President of The Stiff Person Syndrome (SPS) Research Foundation. Their vision is that all people with SPS receive a prompt diagnosis, compassionate care, effective treatments and a cure. The mission is to raise awareness of SPS, to support research for better treatments and a cure for SPS while strengthening the community through education & collaboration.
September 21, 2022
PARENTS AS RARE
Mary Morlino - Parenting With Sarcoidosis & the Global Genes 2022 Rare Patient Advocacy Summit
Mary Morlino is the Rare Concierge Patient Services Manager at Global Genes. In this episode, she discusses her journey parenting with a rare disease, and we the summit, where we will both be speaking on a Parenting While Rare panel. Visit the Global Genes website to learn more about this years event.
August 17, 2022
PARENTS AS RARE
Adam Johnson
Owning My Story
My world was turned upside down when I went from being a healthy 35 year old with an exciting path ahead, to a 35 year old with a rare disease that left me wondering what could have been. It’s my story, and I aim to own it through rare disease advocacy, blogging, podcasting and sharing on social media.
July 20, 2022
PARENTS AS RARE
Chris Freeman
Chronic Pain Dad
The Rare Disease Dad meets the Chronic Pain Dad in this month's episode of Parents As Rare. Chris Freeman is a husband and dad who raises awareness for chronic illnesses, something he knows all too well. He supports all those who are in chronic pain, and his work spreads far and wide.
June 22, 2022
PARENTS AS RARE
Dr. Stephanie Mihalas
Find Your Balance,
Find Your Center
Dr. Stephanie Mihalas is a licensed psychologist, nationally certified school psychologist and a mental health and chronic illness advocate. She’s also a rare disease mom and she has a lot of valuable insight to share with parents.
May 18, 2022
PARENTS AS RARE
Lisa Weinberger
Be Your Own Advocate, Listen To Your Body, Take Control of Your Health, & Ask Questions
Lisa is a wife, mother, digital marketing professor and business owner with over 20 years of experience designing and leading corporate marketing programs. We talk in this episode about balancing work and family while living in the world of rare disease and chronic illness.
April 20, 2022
PARENTS AS RARE
Ross McCreery
Parenting & Living Life With
Chronic Pain
Ross is a husband and parent of two. He decided to increase his patient advocacy efforts after being diagnosed with CRPS, noticing there were gaps in the space. He is very involved in work for the CRPS and Rare Disease communities at large. In our discussion, we hit on these aspects, as well as what it's like living with and parenting through chronic pain.
March 16, 2022
PARENTS AS RARE
Dr. Jennifer Young
Family Coping, Communication, & Mental Health Resources
Dr. Young is a Postdoctoral Scholar in Biomedical Ethics at Stanford University. She is a trained marriage and family therapist who has focused her research on families with rare genetic conditions. Jenni's goal is to improve family coping, communication, and access to mental health resources for the rare disease community, especially for the under-served.
February 16, 2022