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…
Patient Advocates, Patient Leaders
- February 4, 2020
- Tagged as: advocacy, autoimmune condition, caregivers, chronic fatigue syndrome, chronic illness, chronic pain, collagen six intermediate congenital muscular dystrophy, fatigue, fibromyalgia, Limb Girdle, lupus, Lyme disease, muscular dystrophy, neuromuscular disease, patient advocate, patient leader, respiratory, respiratory health, ventilator
What is a Patient Advocate? A patient advocate can be an actual patient with a mental and/or physical health condition, a caregiver for someone with a health condition, or a paid professional advocating on behalf…
It’s not that easy being RARE…
- February 27, 2019
- Tagged as: advocacy, myotonic dystrophy, rare disease, research
February 28 is International Rare Disease Day. There are over 6,000 rare diseases or disorders with 80% having genetic origins. Global events are planned to draw attention to the need for medical research. This brief,…
Maybe you have a firm grasp on what being an Advocate is all about? This episode explores different ways people with disabilities, their allies, and their caregivers practice advocacy. Whether you’re searching for the best…
To kick off Disability Awareness Month, our guest is Nina G – the first female stuttering comedian and dyslexic writer. You’ll get a taste of her stand up material as well as learn about her…
It’s all about support groups! Listen to several support group facilitators talk about their experiences attending and eventually facilitating a support group. Patient advocacy organizations represented include the Muscular Dystrophy Association, Multiple Sclerosis Foundation, and…
AIDS, activism, gut health, micro-organisms & role models: A conversation with Sandor Katz
- September 28, 2016
- Tagged as: AIDS, diet, fermented foods, gut health, nature, nutrition
Sandor Katz has been living with AIDS for over 20 years. In this episode he talks about his early activism, getting back to nature, and his passion for fermented foods. You can learn more about the…
- Advocacy
- Autoimmune Disorders
- Cancer
- Coping
- Disability Rights & Accessibility
- Podcast Episodes
- Social Support
A Woman’s Best Friend
- September 15, 2016
- Tagged as: cancer, disability, multiple sclerosis, service dog
Service dogs can be a best friend for someone with a chronic health condition. In this podcast episode Hazel Weiss, diagnosed with Multiple Sclerosis in 1989, talks about her experiences with first Hams and now…
This week’s guest is Melissa Marshall. We’ve known each other since elementary school. And guess what? She wrote “the cancer fight song!” Listen to Melissa’s story and visit her foundation’s website. Let me know on…
