Parents As Rare - Last 12 Episodes (click photos to listen)
PARENTS AS RARE
Patient Stories from the FAOD Community - Live from the IMC
Feat. Karen, Sylvia, Hayley, Tasia, Alex
Last month at the 2023 International Metabolic Conference in Denver, CO, I presented a session on storytelling & followed it up by encouraging members of the FAOD community to consider sharing their stories as well. This special, live-recorded episode features patient stories that paint a beautiful picture of what their journeys have been like while highlighting the importance of community.
August 16, 2023
PARENTS AS RARE
Karen Richtman
Grandparents As Rare: Find Your Bike
Karen Richtman shares her patient story, shining light on her journey and her connection to Fatty Acid Oxidation Disorder (FAOD). In addition to being a parent as rare, she is also a grandparent as rare, and she has some wonderful aspirations for future support and advocacy.
July 20, 2023
PARENTS AS RARE
Travel Tips from the PAR Community with Lisa Weinberger & host Adam Johnson, including input from Ross McCreery, Tara Zier, Robin Powers, Jireh Somera, and David Ross
With input from the Parents As Rare (PAR) community, Lisa Weinberger joins me to share some tips and tricks for summer travel, hitting the road, or taking to the skies when you have unique health situations and circumstances to consider.
June 21, 2023
PARENTS AS RARE
Renuka Dhinakaran
A Painful Identity
Renuka Dhinakaran is an international labor lawyer, mom, chronic illness patient and an incredible patient advocate. I appreciate her making time to join me on Parents As Rare, especially during some challenging times. Renuka approaches the conversation with great candor & vulnerability. I hope we can all lift her up & show her some support, just as she's done for so many of us.
May 17, 2023
PARENTS AS RARE
Jireh Somera
Fabry Fighter
Jireh Somera is a husband, father and Fabry fighter. While our rare disease journeys have been different, we share a lot of similarities and it’s nice to have someone to relate to. In this episode, Jireh shares some of his journey with us, providing insight into staying present, shifting perspective and trusting the road ahead, knowing that it’s not what he can’t do, but what he can do.
April 27, 2023
PARENTS AS RARE
Grace Vinton, Kristy Dickinson, & Effie Parks
A Rare Revolution -
HITMC Meets Rare Disease
Grace, Kristy, and Effie join me to continue our conversations from the Healthcare and IT Marketing Conference in February. Enjoy this special cross-collaboration of HIT Like a Girl, Parents As Rare, Once Upon a Gene, and Simply Unbreakable. Be sure to check out these podcasts and I'd like to also encourage you to take one actionable step this month to empower the rare disease voice in some way!
March 15, 2023
PARENTS AS RARE
Dr. Neena Nizar
Share Your #RareDiseaseTruth
& Give Love A Chance
Dr. Neena Nizar started the #RareDiseaseTruth movement, a wonderful focal point on social media in February for Rare Disease Month & beyond. After being misdiagnosed for decades, she now shares a diagnosis with her two sons. Neena is a wonderful person, incredible advocate and the founder of The Jansen’s Foundation. Listen in as she shares about her story & giving love a chance.
February 15, 2023
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