Hi Robin, You were so 'matter of fact' in telling your extraordinary story. Health should be a human right for all but sometimes it takes superhuman efforts. Those 'roads that lead to nowhere' seem to have been so prevalent for those with rare diseases. I also love the idea of developing educational videos based on the elevator pitches you noted. Moyez has used small vignettes with actors to demonstrate good/bad/effective consultations/ communications etc. I think it would be extremely beneficial to patients, families, carers, clinicians and researchers to develop a series of actor led/ patient informed vignettes of the experiences of patients with rare diseases. These would not only inform but also help to give patients the confidence to make their own video or use the vignettes as the basis of role plays to give them the confidence to be their own advocates. Good luck with completing your Masters. I look forward to your future series “Doctors say the darndest things”.

Wow 😲 I must say I am very honored by your review of what I saidas well as your ideas. I have gone with the name. @thephysicansays and I am planning on including videos that you spoke of! Please keep your eyes peeled as I have created a blog and I am making a news letter with the name RareAbility. ( Which will become a nonprofit again when I can afford to. You're support means everything to me and keeps me going.

Kimberly Warner is a film director and producer based in Portland, Oregon. After receiving her degree in Pre-Med and Biology at Colorado College and pursuing her Masters degree at National University of Naturopathic Medicine,  Kimberly abruptly changed paths and has never looked back. Her work, still founded in a passion for the psychological and social patterns that influence healing, has traded herbs for a camera, prescriptions for storytelling. 

Kimberly has written, shot, directed and edited narrative films, webisodes and corporate and non-profit brand videos. She’s written and directed two of her own narrative short films and both have screened at film festivals globally and garnered numerous awards. 

In 2015, Kimberly developed Mal de Débarquement Syndrome, an incurable neurological disorder that manifests as a feeling of constant rocking, bobbing or swaying. As months turned to years, her sense of self dissipated as her relationship to her body, her career and her community faded. At forty years young, she watched the rest of the world continue on while she was stuck trying to figure out how to put her pants back on. 

After years of isolation and desperately chasing a fix, Kimberly realized the chase was making her more sick. So she decided to learn how to say “yes” - yes to the messy, uncomfortable, painful journey of being alive and how to incorporate it into a bigger, fuller definition of herself. She founded Unfixed Media Productions in 2019 as way to find others who are doing the same, have honest conversations and demonstrate that our wounds and weaknesses are our strengths, they complete us and they equip us to help others. 

These inevitable peaks and valleys of living with an incurable, chronic condition are part of an expanding Unfixed portfolio that currently includes a docu-series, podcast, round-table webcast and feature documentary film all in production. 

Unfixed Media Productions has led to Kimberly’s larger advocacy role within the chronic illness community where, alongside directing and producing media, she writes and speaks about her own patient experiences and how healing can exist even when our bodies can’t be cured. She is the 2020 recipient of the Invisible Disabilities Association’s Media Impact Award. 

When Kimberly isn’t nurturing and developing the many facets of Unfixed, she works a small, sustainable homestead with her husband in rural Oregon. 

Links 
website: www.unfixedmedia.com
Youtube: https://www.youtube.com/UnfixedCommunity
Podcast: https://unfixedmedia.com/podcast
Instagram: https://www.instagram.com/unfixed_film/
Twitter: https://twitter.com/unfixed_film
Press: https://unfixedmedia.com/press-1
Personal website: www.kimberlywarner.com

Kimberly Warner, Founder unfixedmedia

Leah Barrett is a Licensed Clinical Social Worker and Master’s Level Nutritionist and has been Private Practice for 25 years. She also has worked in medical settings, specifically oncology as well as consulting for nonprofits and teaching at Colorado State University’s School of Social Work. Most recently, Leah has been living with advanced breast and ovarian cancers - the biggest teachers of her life.

Leah Barrett, living with cancer

When Effie’s son, Ford, was born with an extremely rare genetic condition called CTNNB1 syndrome, she dove headfirst into the world of advocacy. CTNNB1 syndrome is caused by a deletion, partial deletion, or mutation of the CTNNB1 gene. It is a neurological condition that can cause a range of symptoms from mild developmental delays to severe physical and intellectual disabilities. To help herself and others cope with and manage raising a child with a disability or rare genetic condition, Effie started the Once Upon a Gene podcast. She shares her personal stories and interviews other parents, patients, advocates, doctors, scientists, and more.

Effie Parks, patient advocate

Leah Barett, MS, LCSW is a Psychotherapist and Nutritionist in Private Practice in Colorado. That is what she does, not who she is. She is a philosopher, nature-lover, sunset chaser and lover of beauty which she strives to see even in the darkest of places. She has a Ph.D. in being human which she gained from living with end-stage ovarian and breast cancer.

Leah Barrett, PhD in being human

Gabe Charbonneau, MD is a rural family physician and high-tech entrepreneur. He is the co-founder of Fluent Systems, an EHR automation software company. He serves as EHR faculty at Practicing Excellence, and has been a physician advisor to the AI scribe companies, Tenor and Saykara. He is also the passionate creator of the #FightBurnout movement on social media, and FightBurnout.org. Gabe lives and practices in Stevensville, Montana.

Gabe Charbonneau, Family Physician

Alastair Santhouse is a Consultant Neuropsychiatrist at The Maudsley Hospital in London. He began his career working in internal medicine, retraining in 1996 as a psychiatrist. He worked as a consultant psychiatrist for 18 years in Guy’s Hospital, London, at the interface between medicine and psychiatry, before moving into neuropsychiatry. He is a fellow of both The Royal College of Physicians and The Royal College of Psychiatrists, and is a former President of the Psychiatry Council at the Royal Society of Medicine. Alastair is an enthusiastic teacher and communicator, and has taught medical students and junior doctors over many years. His book, Head First, was published in 2021 and is available to buy at https://atlantic-books.co.uk/book/head-first/ as well as all good bookstores.

Alastair Santhouse, Neuropsychiatrist and Author of 'Head First'

Tristan Bilash (he/him/human) is a clinical oncology social worker, writer, speaker, Stage 3C ovarian cancer survivor, ADHD thriver, transgender man, and inclusive health advocate. Tristan has presented at numerous provincial and national conferences in Canada, including being a keynote speaker for the Canadian Association of Psychosocial Oncology (CAPO) 2020 National Conference. 
As a transgender health advocate, Tristan is a national 2SLGBTQIA+ representative for the Canadian Association of Psychosocial Oncology Advocacy Committee. He is currently collaborating with the World Ovarian Cancer Coalition on their upcoming No Person Left Behind campaign to improve awareness and care for 2SLGBTQIA+ folks diagnosed with ovarian cancer. 
Tristan’s story is featured in the journal article, “Spare Parts: Navigating Ovarian Cancer As A Transgender Man” which Tristan co-authored with his friend and colleague, Dr. Lauren Walker (University of Calgary, Tom Baker Cancer Centre). “Spare Parts” was recently published in the Journal of Clinical Oncology (Volume 40, Issue 9) and remains free-to-access.
Tristan was recently invited to write a column for the Society of Gynecologic Oncology. “When The Software Says You Don’t Exist: Creating Change As a Trans Man Navigating Ovarian Cancer” was published on SGO’s blog on June 8, 2022. 

Tristan currently resides in Regina (Saskatchewan), Canada. 
 
Links: 
Psychosocial Needs and Experiences of Transgender and Gender Diverse People with Cancer: A Scoping Review and Recommendations for Improved Research and Care
Authors: Lauren R. Squires, Tristan Bilash, Charles S. Kamen, Sheila N. Garland
LGBT Health, Volume 9, Number 1, 2022
 
Spare Parts: Navigating Ovarian Cancer as a Transgender Man | Journal of Clinical Oncology (ascopubs.org) 
Authors:  Tristan Bilash BSW, RSW and Lauren M. Walker, PhD, RPsych, DOI: 10.1200/JCO.21.01249 Journal of Clinical Oncology, Art of Oncology - published online before print January 12, 2022                                                                  
PMID: 35020447
1Supportive Care Department, Allan Blair Cancer Centre, Regina, SK, Canada
2Division of Psychosocial Oncology, Department of Oncology, University of Calgary, Calgary, AB, Canada
3Department of Psychology, University of Calgary, Calgary, AB, Canada
 
When The Software Says You Don’t Exist: Creating Change as a Trans Man Navigating Ovarian Cancer | Tristan Bilash, RSW | Society of Gynecologic Oncology (sgo.org)
Author: Tristan Bilash, Society of Gynecologic Oncology - published online June 8, 2022
 
Social Media / Contact
Personal Blog – A Cup of Strong T  https://acupofstrongt.blog/
Twitter - @strongtlb1

Tristan Bilash (he/him/human) is a clinical oncology social worker, writer, speaker.

Catherine Foot is Director of Phoenix Insights, a new think tank set up to transform the way society responds to the possibilities of longer lives. Phoenix Insights is part of The Phoenix Group, the UK’s largest long-term savings and retirement business. 
 
Catherine is a research and policy specialist in ageing and longevity, and from 2015 to 2021 was Director of Evidence at the Centre for Ageing Better, a charitable foundation funded by The National Lottery Community Fund, and part of the government’s What Works Network. Catherine has also held senior roles at the health and social care think tank The King’s Fund, and the medical research charity Cancer Research UK.

Catherine Foot, Director of Phoenix Insights

Robin Powers is an expert in Ehlers-Danlos syndrome and other rare connective tissue disorders. She is a  PCORI Ambassador, she is a seasoned advocate for rare diseases and patients with undiagnosed conditions and is also a motivational speaker. She is a researcher and biochemical pharmacologist, earning her degree at Buffalo State College in 2019.

Robin Powers, Patient Advocate.

Dr. Rakel started his career near the Teton Mountains in Driggs, Idaho where he was in rural private practice for five years before completing a two-year residential fellowship in integrative medicine at the University of Arizona Health Sciences Center. He was the founder and director of the University of Wisconsin Integrative Medicine Program and was awarded tenure in the department of family medicine at the UW School of Medicine and Public Health in 2010.

David Rakel Podcast

Dr. Victor Montori is Professor of Medicine at Mayo Clinic. He is a practicing endocrinologist, researcher, and author and a recognized expert in evidence-based medicine and shared decision-making. Dr. Montori developed the concept of minimally disruptive medicine and works to advance person-centered care for patients with diabetes and other chronic conditions. He is the author of Why We Revolt – a Patient Revolution for Careful and Kind Care.

Victor Montori Interview

The Health Design Podcast brought to you by the Journal of Health Design(www.journalofhealthdesign.com). Features interviews with the world's leading health design experts including clinicians, designers, patients, authors and researchers. Better health by design.

Robin Powers, Patient Advocate.

The Health Design Podcast

Recent comments

Robin A Powers

Alexandra McManus, Director McManus R&D Consulting

Related tracks