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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  

Finding Parents As Rare - PAR

 Parents As Rare is a series of MitoAction's Energy In Action podcast. 

PAR episodes include numbers 33, 36, 39, 43, 46, 48, 52, 55, 57, 59, 62, 65, 68, 71, 73, 74, and the trailer.


You can find links to PAR episodes on this page by clicking the links in each photo above. You can also access MitoAction.org and select Energy In Action under Programs and Support, Education. 


Episodes can also be found on your favorite podcast platform:


Spotify - search Parents As Rare or Energy In Action & filter to my episodes


Apple & Google Podcast - search for Energy In Action, & see episodes titled Parents As Rare 

Thank You

Being a podcast host is not something I had every really considered, until the idea was presented to me by a friend. Even then, I dismissed it quickly. Who would want to listen to me on any kind of regular basis? Well, I still think that's a valid question, but I do think there will be interest in hearing the perspective of my guests. 


Thank you for listening, and a huge thank you to those who have joined me to discuss these important topics. I appreciate their openness and vulnerability, and all that they do to help others in the rare disease or chronic illness space. Please feel free to reach out with ideas, comments, or feedback. I'm always looking to improve, and I know I have plenty of room to do so.

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