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Past Workshops & Posts by CF Parents

NACFC 2022 Research Highlights

12/19/2022

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TOPIC:
NACFC 2022 Research Highlights: Update for CF Parents


WORKSHOP DATE:
Thursday, December 8, 2022

GUEST PRESENTER:

Charles Esther, MD, PhD

Hear the latest research and updates on CF from the 2022 North American Cystic Fibrosis Conference (NACFC).


PRESENTATION RECORDING:

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Get the Respiratory Rundown!

2/28/2022

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TOPIC:
Get the Respiratory Rundown with Duke University Respiratory Therapists. Presentation features useful information on therapies, devices, cleaning, and exercise/therapy. Including info on treatments while on Trikafta.

DATE:
Thursday, February 24, 2022

GUEST SPEAKERS:
John Davidson &
Kathe Neeley
Duke University Respiratory Therapists

Recording of Workshop Available Below:
CFF CLEANING & DISINFECTING GUIDELINES
CF VEST SETTINGS

Product Information

The below products were referenced in the workshop. Click the image for more information on the manufacturers website.
Picture
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Managing the Medication Madness

4/26/2021

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Enjoy the video presentation, and scroll below for links to recommended apps and websites to help you manage your medications!

TOPIC:

Managing the Medication Madness
Learn tips for organizing and keeping track of medications, the various specialty pharmacies, and getting a system for refilling them so you can save time. Also, learn about programs for CF medications that offer nutritional supplements at no extra cost!

DATE:
Thursday, April 22, 2021

GUEST SPEAKERS:
Clinical Pharmacists, UNC Chapel HillCameron McKinzie, Pharm.D. & Charissa Kam, Pharm.D.

Video Recording of Workshop:
DOWNLOAD SLIDES

CF Programs and Patient Assistance

HFealthwell Foundation®
  • CF Treatments Fund
  • CF Vitamins and Supplements Fund
www.healthwellfoundation.org

Creon® CareForward
www.creon.com/cfcareforward

Live2Thrive (Zenpep®)
www.live2thrive.org

Vivus Healthstore (Pancreaze)
store.vivushealth.com

Vertex GPS
www.vertexgps.com

Pulmozyme
www.pulmozyme.com

MedActionPlan
medactionplan.com

FREE APPS:

MyMedSchedule
medactionplan.com/mymedschedule

Mango Health
www.mangohealth.com

Medisafe
www.medisafeapp.com
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Infection Prevention 101

3/4/2021

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TOPIC:
Infection Prevention 101:
Discover healthy best practices for those with CF and their extended families!

DATE:
Thursday, February 25, 2021

GUEST SPEAKERS:
Natalie Schnell, RN
UNC Hospital Epidemiology


Enjoy the video presentation, and scroll below for answers to questions and additional resources on infection prevention.

Video Recording of Workshop Available:

Q&A with Natalie

What is the Efficacy of Norwex supplies & cleaning cloths with silver anti-microbial woven in?
  • I was unable to find any scientific research in a peer-reviewed journal regarding this brand through UNC’s health sciences library and PubMed.  Individual ingredients of the products in question could be researched to determine whether there is proven effectiveness against bacteria, viruses, fungi, etc.  It is also important to note whether a product’s claims state that it can be used for disinfection.
  • If a microfiber cleaning cloth has silver woven into the fabric, it works to inhibit microbial growth within the cloth only.  While microfiber is very effective, a cleaning solution should still be used with that item.
 
How effective are neck gaiters?
  • Based on most recent research, neck gaiters are an effective means of protection, as long as they fit well and consistently stay in place.  The effectiveness can vary based on the type of material.  Very effective combination when worn over a procedure mask.
 
Are there suggestions for low odor cleaning supplies?
  • One of the products used in the hospital is accelerated hydrogen peroxide (AHP), but 3% hydrogen peroxide is an effective disinfectant for home use.  This is the same concentration found at pharmacies, but I am not sure if the brand-name cleaners like Lysol or Clorox use the 3% hydrogen peroxide or AHP in their hydrogen peroxide-specific preparations.
  • The EPA maintains lists of registered antimicrobial products with claims against common pathogens: https://www.epa.gov/pesticide-registration/selected-epa-registered-disinfectants
 
How effective is UV light for disinfection?
  • For UV light to be effective, it must reach all surfaces of the area to be cleaned in question – it will not penetrate the surface.  For example, waving a device like a UV light wand over a cell phone will only disinfect that side of the cell phone – it would need to be waved over the other side, as well.  Junctions between the case and the phone can have an increased microbial burden, and physical cleaning will be the best way to ensure thorough removal.  Using items like UV light may also effect the warranty of your device – follow the manufacturer’s instructions for cleaning.
  • Unlike the EPA-registered items we would use in the hospital with proven claims, there is not currently an agency that validates whether these products for home use meet the standards they advertise.  While we know UV light works effectively for disinfection, there is no way to confirm whether the devices sold by a myriad of companies use adequate amounts of light, what the specified square footage for use may be, and what the quality of the bulbs sold with the device is.
 
Do you have suggestions for proper mask fit?
  • Department director Emily Sickbert-Bennett’s video for optimizing mask fit can be found here:
    https://www.youtube.com/watch?feature=youtu.be&v=UANi8Cc71A0
Summary graphics of recent mask efficacy data are below:
(click on image to enlarge)
Mask Fit 1
Mask Fit 2
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Cystic Fibrosis Assistance Programs

3/26/2020

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Many companies and organizations offer financial assistance to families with Cystic Fibrosis. Download this guide to help you understand the resources available and how to take advantage of these programs.
Assistance Programs
Click to Download PDF
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CF Assistance Programs & Medication Action Plans

6/26/2018

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TOPIC:
CF Pharmacy Assistance Programs & Resources
Medication Action Plans: Improving Adherence and Encouraging Medication Independence

DATE:
Tuesday, June 26, 2018

GUEST SPEAKERS:
Cameron J. McKinzie, PharmD
UNC Chapel Hill

Tara Bell, PharmD
Duke

Clinical Pharmacist Practitioners,
Pediatric Pulmonology
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