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All Things Cystic Fibrosis
Past Workshops & Posts by CF Parents

Insurance 101: Insurance Basics for People with CF

2/16/2023

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TOPIC:
Insurance 101: Insurance Basics for People with CF

WORKSHOP DATE:
Thursday, February 16, 2023

GUEST PRESENTER:
Presented by CFF COMPASS
Kelly Muldowney
Senior Case Manager, CF Foundation


Are you a young adult about to go off of your parents' insurance?
A parent of a newly diagnosed child with CF?
Switching employers or needing to change health insurance plans?
Then THIS is the workshop for you!

Overview of Topics Covered:
  • Insurance basic terminology
  • What are the options?
  • When can you get insurance?
  • What do you need prepared?
  • You got covered! What comes next?
  • Coordinating more than one insurance
  • Denials, Appeals, Authorizations
  • Q&A

PRESENTATION RECORDING:

ADDITIONAL TOOLS:

  • Navigating CF Series
  • Compass
  • CFF.org
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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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Surviving Clinic Visits and Medical Procedures:Tips from a Child Life Specialist

10/6/2022

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

6/26/2022

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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:

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Gastroenterology (GI) Issues in CF

4/28/2022

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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.
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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
Picture
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2021 NACFC News & Highlights

12/16/2021

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TOPIC:
News & Highlights from the 2021 North American CF Conference (NACFC)

DATE:
Thursday, December 9, 2021

GUEST SPEAKERS:
Jennifer Goralski, MD
UNC Pediatric and Adult CF Clinics

Listen to CF News and Research Highlights from the 2021 NACFC.

Recording of Workshop Available Below:
*Scroll below video to download slides from presentation!
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Scholarships, Grants & Other Benefits for People with CF

10/9/2021

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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!
  • thebonnellfoundation.org/resources
  • teamimpact.org
  • victoryjunction.org
  • Make A Wish - wish.org
  • letsrockcf.org/kicksback
  • www.icingsmiles.org
  • Free Access to National Parks
  • www.cfri.org
  • www.milesforcf.org
  • www.cflf.org/recreation-grants
  • Compass
  • www.abbviecfscholarship.com
  • www.vrtx.com/cystic-fibrosis/scholarships
  • cfyogi.org
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Back-to-School Helpful Nutrition Tips for Snacks and Lunches

8/23/2021

1 Comment

 
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
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The Impact of Clinical Research

6/25/2021

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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:

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:
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