CF Blog - CYSTIC FIBROSIS PARENT EDUCATION

Surviving Clinic Visits and Medical Procedures:Tips from a Child Life Specialist

10/6/2022

TOPIC:
Surviving Clinic Visits and Medical Procedures: Tips from a Child Life Specialist

WORKSHOP DATE:
Thursday, October 6, 2022

GUEST PRESENTER:
Jordan Hulliger, CCLS

Watch the presentation and Q&A with a Child Life Specialist. Discover tips and suggestions on how to make clinic visits and medical procedures a little easier for both children and parents!

DOWNLOAD SLIDES

Recording of Workshop Available Below:

Mental Health: Recognizing the Needs of Caregivers and Those with CF

6/26/2022

TOPIC:
Mental Health: Recognizing the Needs of Caregivers and Those with CF

WORKSHOP DATE:
Thursday, June 2, 2022
Virtual Event

GUEST PRESENTER:
Mary Beth Prieur, Ph.D. Clinical Psychology - UNC
Amy Sangria, MSW, LCSW - UNC
Ellen Penta, LCSW, LCAS-A - UNC

UNC Clinical Psychologist and CF Social Workers discuss the very important topic of Mental Health.

Recording of Workshop Available Below:

Gastroenterology (GI) Issues in CF

4/28/2022

TOPIC:
Gastroenterology (GI) Issues & Complications in CF
It's not all about the lung!

WORKSHOP DATE:
Thursday, April 28, 2022
Virtual Event

GUEST PRESENTER:
Dr. Dhiren Patel
Pediatric Gastroenterology Specialist
SSM Health Cardinal Glennon Children's Hospital, St. Louis, Missouri

Recording of Workshop Available Below:

CLICK HERE to download the research paper demonstrating safety of Miralax.

Get the Respiratory Rundown!

2/28/2022

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.

Scholarships, Grants & Other Benefits for People with CF

10/9/2021

TOPIC:
Scholarships, Grants & Other Benefits for People with CF

DATE:
Thursday, October 7, 2021

GUEST SPEAKERS:
Laura Bonnell
Founder of the Bonnel Foundation
thebonnellfoundation.org
&
Ellen Pentra
UNC Social Worker
&
Kimberly Houston
RN, MSN, CPNP and...CF Mom

Discover opportunities available to your child with CF. Our guest speakers will highlight local and national programs available for people with CF. We also invite parents of older children to join the meeting and share personal experiences.

Scroll down below the video to links to resources!

Recording of Workshop Available Below:
*Scroll below video to download slides from presentation!

Resources:

Below is a list of resources mentioned in the workshop. If you have additional resources to add to our list, please leave a comment!

Back-to-School Helpful Nutrition Tips for Snacks and Lunches

8/23/2021

TOPIC:
Back-to-School Helpful Nutrition Tips for Snacks and Lunches

DATE:
Thursday, August 19, 2021

GUEST SPEAKERS:
Kimberly Stephenson, MS, RD, CSP
Kely Baumberger, PD, LDN, CSP

Are you getting ready to send your child with CF back to school? Want some great tips and hacks for lunch and snacks? Be sure to watch this informative and helpful workshop with two dietitians!

Recording of Workshop Available Below:
*Scroll below video to download slides from presentation!

DOWNLOAD SLIDES

The Impact of Clinical Research

6/25/2021

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

TOPIC:
Breathing Easy with Cystic Fibrosis: The Impact of Clinical Research
Tune in for an overview of clinical trials. Learn how they work & discover why we need participants with CF more than ever.

DATE:
Thursday, June 24, 2021

GUEST SPEAKER:
Lisa Holmes, CRC RMAII
Research Coordinator, Duke

Video Recording of Workshop:

Managing the Medication Madness

4/26/2021

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

Infection Prevention 101

3/4/2021

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

2020 NACFC Recap

12/14/2020

TOPIC:
2020 NACFC Recap with Dr. Retsch-Bogart

Dr. Retsch-Bogart, Pediatric Pulmonologist from UNC-CH shared recap and updates from the 2020 North American Cystic Fibrosis Conference (NACFC).

DATE:
Thursday, December 10, 2020

GUEST SPEAKERS:
Dr. Retsch-Bogart
Pediatric Pulmonologist
UNC-Chapel Hill

Video Recording of Workshop Available: