February 28th is Rare Disease Day. Twenty-five to 30 million Americans live with a rare disease. For more facts and figures related to rare diseases, check the NORD website. This podcast episode catches up with…
Over the past month there’s been some chatting — with a Professional Patient and a few virtual friends sharing how they cope with the holidays. I noticed a Facebook posting from a high school classmate…
September 15th is International Myotonic Dystrophy Awareness Day. To learn more about helping educate and advocate for Myotonic Dystrophy visit the Muscular Dystrophy Association or Myotonic Dystrophy Foundation. The purpose of International Myotonic Dystrophy Awareness…
Glenn Ribotsky, a Board member with the Western Neuropathy Association, shares his dramatic initiation as a patient into the world of peripheral neuropathy. Now, 18 years later he advocates and offers support to others experiencing…
Traditionally the month of October is the time to become aware of people with disabilities — either a visible or invisible disability — but here we’re drawing attention to all those who face physical and…
What is that growing on me — could it be skin cancer? Have you asked yourself this question? During the pandemic I ignored a couple of what I thought were pimples because I was terrified…
Telling a patient story can be a highly emotional task for anyone. Thankfully, there are people who can help. Emily Newberry – author, speaker, coach – at the Kaiser Permanente in Oregon, is one of…
Do you see images of yourself reflected in popular media? As a person with a chronic health condition and/or disability, is your life reflected in movies, television, print, or social media? In this themed podcast…
Are you ready for three days of workshops, adaptive activities, and discovering resources and services to enhance your quality of life? Peruse the agenda, make plans for November 20-22, and register for the free Virtual…
This is part 2 of a conversation with Dalia Kinsey, RD, LD, SNS. We talk about becoming our authentic selves, how trauma impacts our physical and emotional health, and the need for inclusivity and intersectionality…