KOL (Key Opinion Leader) Video Series

5/27/2020

A message of hope for the future of IPF treatment

Dr. Naftali Kaminski, Boehringer Ingelheim Pharmaceuticals, Inc. Professor of Medicine (Pulmonary); Section Chief, Pulmonary, Critical Care & Sleep Medicine, talks about what the future of research could mean for the possibility of a cure for IPF.

5/28/2020

Bill's story: What my IPF diagnosis means to me

Bill Vick explains how his IPF diagnosis experience inspired him to start PF Warriors.

5/29/2020

IPF is different in everybody.

The way #IPF progresses is unpredictable & may differ from person to person. Taleena Koch, PF Advocate and founder of the Breathe Support Network, explains why it's important to be prepared.

6/1/2020

There's no cure for IPF, but that doesn't mean nothing can be
done about it.

This week we're sharing videos about how you can feel more in charge of your IPF.

 

Here's Dr. Noah Greenspan, DPT, CCS, EMT-B and founder of the Pulmonary Wellness Foundation, talking about the 5 pillars of pulmonary wellness.

6/3/2020

What are some things you can do to raise IPF awareness?

Whether big or small, Teresa Barnes, Caregiver and PF Advocate, talks about some things that almost anybody can do to raise awareness of idiopathic pulmonary fibrosis.

6/5/2020

Taking control of your health when you have IPF.

Carol Bair, RT and Clinical Research Coordinator, explains that while you may not be able to control the progression of IPF, there are things you can do to take control of your overall health and wellness.

6/7/2020

The importance of seeing a PF specialist.

Taleena Koch, PF advocate and founder of the Breathe Support Network, explains why you need a specialist PF pulmonologist to get the best IPF care. 

6/8/2020

How can pulmonary rehabilitation benefit IPF patients?

Carol Bair, RT and Clinical Research Coordinator, explains some of the basics of pulmonary rehabilitation and why it's so important if you have IPF.

6/15/2020

The Basics of IPF and Oxygen.

Carol Bair, RT and Clinical Research Coordinator, explains some of the basics of using prescribed oxygen, and how it can help people with IPF live longer and maximize quality of life.

6/19/2020

Tips from a Respiratory Therapist on Using Oxygen

Carol Bair, RT and Clinical Research Coordinator, gives some advice on how to avoid thinking of oxygen as a burden, but as a way to preserve your health and quality of life with IPF.

6/22/2020

What is Genetic Counseling?

It's week 5 of our Key Opinion Leader video series & we'll be hearing every day this week from Janet Talbert, Senior Genetic Counselor.  Janet is a board-certified genetic counselor specialist in the field of

heredity of IPF.

6/23/2020

Is IPF Genetic?

Janet Talbert, MS, CGC discusses the differences between sporadic (random) IPF and familial (genetic) IPF, and touches on the complex genetic nature of this disease.

6/24/2020

I have a blood relative with #IPF: How can genetic testing help me understand my risk?

Genetic testing isn't always so straightforward. Janet Talbert, MS, CGC talks about the abilities & limitations of genetic testing as a way to assess your risk of developing IPF.

6/25/2020

Genetic testing and IPF: Clinical testing vs. research testing

Janet Talbert, MS, CGC explains the key differences between genetic tests ordered by your health care provider and genetic testing for research purposes.

6/26/2020

Genetic testing and IPF: What can the results tell us? 

Janet Talbert, MS, CGC goes over the basics of genetic test results and explains what they can tell us, and what they cannot.

6/28/2020

How can I access genetic counseling services? 

Janet Talbert, MS, CGC explains the basics of genetic counseling, and how it can be incorporated into your IPF care.

6/29/2020

How communication strengthens your partnership with your caregiver. 

It's week 6 of our expert video series & Taleena Koch, founder of the Breathe Support Network talks about how open & honest communication with your caregiver can help strengthen your partnership & make conversations about an uncertain future a little less unpredictable.

7/1/2020

IPF and the end of life: Managing difficult conversations.

It's hard to predict the progression of IPF. Taleena Koch, founder of the Breathe Support Network, explains how confronting these tough conversations early on
about your expectations and wishes
for the end of life can be helpful for
you and your loved ones.

7/3/2020

Hospice and Palliative Care for IPF: Comfort at the end of life.


Taleena Koch, founder of the Breathe Support Network, talks about how hospice and palliative care can help ease suffering and maximize quality of life for someone facing the end stages of IPF.

7/5/2020

Taleena's story: Reflections as a caregiver.

Taleena Koch, founder of the Breathe Support Network talks about how she and her mum stayed positive following her mum's

diagnosis with IPF.

7/6/2020

IPF and the power of patient voices.

It's week 7 of our key opinion leader video series. This week we're looking at advocacy and awareness. Teresa Barnes is a tireless advocate for IPF. In this video, she describes why your voice as an IPF patient or caregiver
is so important and how it can
make a difference.

7/8/2020

What are some things you can do to raise IPF awareness?

Whether big or small, Teresa Barnes talks about some things that almost anybody
can do to raise awareness of idiopathic
pulmonary fibrosis. 

7/10/2020

Advocacy in IPF.

Teresa Barnes discusses the past, present, and future of advocacy efforts in the field of idiopathic pulmonary fibrosis, as well as some of the roadblocks patients and loved ones may face when wanting to get involved in legislative advocacy efforts.

7/12/2020

A message to primary care clinicians from an IPF advocate.

Teresa Barnes reminds us that while there's
no cure for IPF, primary care clinicians
can still play a vital role in improving
the quality of life of IPF patients.

7/13/2020

The IPF Cell Atlas: How sharing data can accelerate discovery

It's week 8 of our expert IPF series and
this week Dr. Naftali Kaminski explains
how IPF research has progressed, and how cataloging the genomics of lung cells
allows for a new level of understanding
that could one day lead to a cure. 

7/16/2020

How Clinical Trials Can
Benefit Everyone

Teresa Barnes explains how clinical trials not only benefit science, but can provide benefit to the study participants as well.

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Prepared by: Taleena Koch - Pulmonary Fibrosis Advocate for Patients and Families

Breathe Support Network

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