Parents As Rare - Series Archive (click photos to listen)
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
PARENTS AS RARE
David Ross
Cowden Syndrome & Male Mental Health
David is a rare disease patient advocate, highlighting the importance of mental health, specifically for males. David and I discuss these things and more, including our collaborative top tips for rare parents piece from Rare Revolution Magazine.
January 19, 2022
PARENTS AS RARE
Kristy Dickinson
Chronically Simple & Simply Unbreakable
Kristy is a wife & mother of three. While navigating life with multiple rare diseases, she founded Chronically Simple, a digital health app that empowers patients to own their healthcare. She also writes a blog & co-hosts the Simply Unbreakable podcast.
December 15, 2021
PARENTS AS RARE
Nathan Peck
Parenting with VCP Disease
Nathan Peck is a husband, dad, VCP patient, CEO of Cure VCP Disease, & a good friend of mine. He navigates parenting as rare while bringing together patients, caregivers, researchers, pharma, non-profits & investors to cure VCP.
November 17, 2021
PARENTS AS RARE
Emma & Spencer
The Heart of Parents As Rare
As a dad with a rare disease, I often think about the ways my children have been impacted. My children, 11 year old Emma and 5 year old Spencer, share their thoughts and feelings on this inaugural episode.
October 20, 2021
PARENTS AS RARE
Trailer
I am Adam Johnson, a dad and rare disease patient advocate, a self-proclaimed Dadvocate. From the onset of symptoms and after the diagnosis of a progressive mitochondrial disease with no treatment or cures, the isolation was almost as excruciating as the symptoms. I felt alone in so many ways, but in particular as a parent. I knew I couldn’t be the only person with a rare disease who was trying to raise children, but it felt like I was. Without the community I was seeking, I decided to build it myself. Living life as a parent with a rare disease can be paradoxical. We laugh and cry, we’re vulnerable and scared, we’re brave and afraid- all at the same time. Parents As Rare, a series brought to you by the Energy In Action podcast, is a community where parents who have a rare disease or chronic illness can connect, share, support and be supported.
September 29, 2021