Do you feel helpless in the face of “the system?” We are here to help you learn how to take control and steer your way to health. Hear how others have met these challenges and overcome them. Learn how you can do so too. Share your experiences, ask your questions, and learn how to create and manage your health care team. Make the healthcare system work for you!
Managing the System
Then and Now – VHL Alliance in 1994 and 2021
Members of the 1994 Board of Directors of the VHL Alliance meet with Chandra Clark, current Executive Director, and Heidi Leone, Director of Advancement.
ListenTeaching Visually Impaired Students in Public Schools
Arlene Hernandez, a retired TVI, talks with Joyce about the joys and challenges of teaching visually handicapped students in the public schools.
Kaelin wins a Nobel Prize!
Harvard doctor among trio of scientists jointly awarded Nobel Prize in medicine for their work identifying how cells adapt to changes in oxygen levels.
Cancer Biology and Dr. Copland’s Lab
Cancer is a complex disease, and no one knows this better than Dr. John “Al” Copland, who has made cancer research his life’s work.
Access and Care for People with Disabilities
The US’s disability social safety net is profoundly broken, says Anna Landry, a handicapped student at Georgetown University.
Kidney Cancer patient experience in North Carolina
Conversation with Ann and Chris about their experiences
Myeloma Patient Rockstar: Cindy Chmielewski
We learn some interesting things about multiple myeloma.
Rebecca Esparza campaigns for Ovarian Cancer
Rebecca speaks for all women with ovarian cancer, including those taken from us too soon.
Fighting Colorectal Cancer by understanding your risk factors
Wenora Johnson shares her story — surviving cancer 3 times, she is passionate about understanding your biomarkers.
Susie Brain, a survivor of breast cancer, works with researchers to find a cure
Susie Brain speaks with Mike, Robin and Joyce about her work as a survivor and advocate with breast cancer.
Colorado hosts 25th Annual VHL Family Conference
I was privileged to attend the 25th Annual VHL Family Conference in Colorado this past weekend. It was a wonderful meeting. Kudos to Dr. Nicholas Cost and the University of Colorado for their teamwork in serving people with VHL.
Exploring Your Genome
Max McCoy speaks with Joyce about his recent personal adventure, exploring the depths of his own genome — an ongoing adventure worthy of some of his fictional heroes, with unexpected twists and turns, sometimes more information than you know what to do with.
ListenManaging Small Renal Masses – Patient Survey
Debra Gottsleben and KCCure surveyed patients with benign renal masses and reported findings to the American Urological Association.
Managing Your Health
Breathing Problems? Consider SubGlottic Stenosis (SGS)
Catherine Anderson has prepared a Rough Guide for patients to help with SubGlottic Stenosis (SGS), or scar tissue in the trachea constraining breathing.
Understanding and Managing Post Polio Syndrome
Ina Pinkney, the Breakfast Queen of Chicago, joins Joyce Graff to speak about Post Polio Syndrome, which can impact someone who survived polio.
Talking with Joyce Graff
Host Harvey Bravman focuses on her work with Powerful Patient, empowering people to partner with their health care providers and manage their own health.
Why We Do the Things We Do
Bob Raleigh talks about his research into why we do the things we do. He describes how doctors and counselors can shape their messages in order to be heard.
COVID-19 and Participatory Medicine
Author Michael Millenson speaks with us about how people with complex medical conditions need to work with their doctors to manage the risks of COVID-19.
Wellness and Resilience through Integrated Health
Dr. Daniel Monti speaks with Joyce Graff and Megan Conley about his new book, Tapestry of Health, providing guidance on supporting your own wellness and resilience.
Clinical Trials in the time of COVID-19
Joyce and Robin speak with Dr. David Gerber of UTSW about the changes that have been made to keep clinical trials going and patients safe during the COVID emergency.
Managing Your Life
COVID-19 and Participatory Medicine
Author Michael Millenson speaks with us about how people with complex medical conditions need to work with their doctors to manage the risks of COVID-19.
Rare Disease Day Events
While horses are more common, zebra do exist. People with rare diseases deserve a diagnosis and fair access to care. Come and learn.
Wellness and Resilience through Integrated Health
Dr. Daniel Monti speaks with Joyce Graff and Megan Conley about his new book, Tapestry of Health, providing guidance on supporting your own wellness and resilience.
COVID: The Real Science
Five experts meet to discuss COVID-19, how to end a pandemic, and how to protect ourselves while it is with us: Masks, Testing, Vaccines, and keeping safe.
COVID Online Schooling for the Visually Impaired
Sue Buckley of Knoxville has been helping blind young people to gain the skills needed to succeed at online learning. Hints for parents and teachers.
Staying Sane in Quarantine
How to manage your stress in quarantine with the underlying conditions that were already there?
Coronavirus – the New Normal
Robin Martinez and Joyce Graff talk about the coronavirus and how to protect yourself in these exceptional times.
Mental Health and Destructive Behavior
Depression can lead to many dangers, including addiction, suicide, and various forms of self-harm.
Access and Care for People with Disabilities
The US’s disability social safety net is profoundly broken, says Anna Landry, a handicapped student at Georgetown University.
Susie Brain, a survivor of breast cancer, works with researchers to find a cure
Susie Brain speaks with Mike, Robin and Joyce about her work as a survivor and advocate with breast cancer.
Genes and your health
We here at Powerful Patient have a strong interest in family health history, and helping people and communities understand how genetic testing can improve health.
