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All Things Cystic Fibrosis
Past Workshops & Posts by CF Parents

How to Find Support with CF Peer Connect

9/23/2023

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Discover how to connect with a CF Peer for support!
CF Peer Connect Button
CF Peer Connect is a one-to-one peer support program for people with CF and their family members ages 16 and older. No matter your age or stage in life, you can connect with someone who has been through a similar situation to share stories and learn from each other. In this Fall workshop, you'll learn how to take the step to connect with a peer and get the support you need.

Watch Workshop Recording Below:

Workshop Date:
Thursday, September 14, 2023

Hosted by:
CF Peer Connect

Guest Speaker:
Claudia Rodriguez, CFF Bilingual Community Support Specialist

How to Request a Peer Connection:

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CFF.ORG/PEERCONNECT

Download Flyer (English/Spanish):

CF Peer Connect Flyer English
CF Peer Connect Flyer Spanish
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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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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.
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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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2020 NACFC Recap

12/14/2020

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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:
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Understanding CFF Compass

10/8/2020

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TOPIC:
Understanding Compass

DATE:
Thursday, October 8, 2020

GUEST SPEAKERS:
Aaron Stocks
COMPASS Operations Manager

Video Recording of Workshop Available:
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CF Peer Connect

1/15/2020

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CF Peer Connect
CF Peer Connect is a one-to-one peer mentoring program for adults with CF and their family members to connect about shared experiences. No matter what you’re going through, there is someone who has been through a similar experience and can offer support. After you request a peer mentor, the CF Peer Connect team will match you with an adult with CF or a family member -- parent, partner, or spouse -- who has experience with the topics you want to learn more about.

You can request a peer mentor to talk about topics that are important to you, including:
  • Going to college
  • Making work/career decisions
  • Dating, relationships, and marriage
  • Adjusting to your child’s new diagnosis
  • Finding balance as a caregiver
  • Starting a family
  • Parenting
  • Getting diagnosed as a teen or adult
  • Considering lung transplant
  • Coping with bereavement
LEARN MORE
REQUEST A PEER MENTOR
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Research Updates from 2019 NACFC

11/19/2019

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TOPIC:
Research Updates from 2019 North American Cystic Fibrosis Conference (NACFC)

DATE:
Thursday, November 19, 2019

GUEST SPEAKERS:
Dr. Marianne Muhlebach, MD

Recording from this workshop is available:
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Care for the Caregivers

5/30/2019

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TOPIC:
CF Center Mental Health Updates - Care for the Caregivers

Being a caregiver to an individual with chronic health needs can require time for re-energizing, reflection, and respite, among other things. Caregivers do not always have the luxury to give themselves the self-care they need. It is still important! Listen to Dr. Cupito discuss changes that are coming to all CF centers in an attempt to provide caregivers with connections for support.

DATE:
Thursday, May 30, 2019

GUEST SPEAKER:
Alexandra Cupito, PD

Recording of workshop available:
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