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Past Workshops & Posts by CF Parents

Coping with the Emotional Rollercoaster

3/24/2025

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Our CF education workshops are in partnership with Bright Beginnings: a program for parents of newly diagnosed children with CF. Guest speaker, Lisa Greene, parent and Certified Family Life Educator, presented on "coping with the emotional rollercoaster".
The emotions of dealing with CF have been described as being on an "emotional rollercoaster." Learning how to accept and cope with the ups and downs of life with CF as early as possible will help you build resilience.

This workshop helped participants explore wellness & self-care strategies to nurture their resilience, as well as identify ways to cope with difficult feelings and stress.
  • Emotional Wellness
  • Environmental Wellness
  • Financial Wellness
  • Intellectual Wellness
  • Physical Wellness
  • Vocational Wellness
  • Relational Wellness
  • Spiritual Wellness

Review the slides below for help coping with the emotion rollercoaster:

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The complete session is available in Module 3 of the Bright Beginnings program. Bright Beginnings is a free program for parents and caregivers of newly diagnosed children with cystic fibrosis. If you'd like to explore the program, please click the button below to get started.
GO TO BRIGHT BEGINNINGS
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Newly Diagnosed Children with CF

10/24/2024

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Our recent workshop was in partnership with Bright Beginnings: a program for parents of newly diagnosed children with CF. Guest speaker, Lisa Greene, facilitated discussion and presented on resilience.

Some key discussion points include:
  • Chronic illness affects more than just "the body"
  • Community for CF parents
  • Myths & truths about resilience

Click the button below to download slides from the workshop.
DOWNLOAD SLIDES

If you would like to participate in the live discussion, be sure to register for our next workshop in January.
REGISTER
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2023 NACFC Highlights

12/11/2023

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2023 North American Cystic Fibrosis Conference (NACFC) Highlights

Hear the latest research from the 2023 North American Cystic Fibrosis Conference (NACFC).

WORKSHOP DATE:
Thursday, November 30, 2023

GUEST PRESENTER:
Dr. Charles Esther
UNC Chapel Hill Children’s Research Institute

Throughout the session, Dr. Esther references the several sessions available to watch on the CF Foundation (CFF) YouTube channel. Chick the button below to watch these recordings.
CFF YOUTUBE CHANNEL
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The Importance of Mental Health When Living With a Chronic Disease

6/20/2023

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The Importance of Mental Health When Living With a Chronic Disease

This workshop discusses the importance of mental health and how the entire family can be affected when you are dealing with CF. Learn how parents can help their children with mental health, as well as what signs to look for in themselves.

Scroll below video for links to resources and slides!

WORKSHOP DATE:
Thursday, June 15, 2023

GUEST PRESENTER:
Presented by Elizabeth Jorgensen, MSM, LCSW
CF Social Worker
Atrium Health Levine Children's CF Center


Elizabeth Jorgensen currently works as a clinical social worker with Atrium Health Levine Children's Cystic Fibrosis program. Since starting as the CF social worker in 2015 she has started a Family Advisory Board, implemented mental health screening, and helped organize many educational events. Elizabeth obtained her LCSW in May 2018. During the summer of 2020 during the global pandemic she along with the Atrium Health CF psychologist started a virtual support group for CF teens.

Watch Workshop Recording


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DOWNLOAD SLIDES:
DOWNLOAD SLIDES

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RECOMMENDED BOOK:
Cystic Fibrosis Wacky Juice Machines
ORDER BOOK

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RECOMMENDED BOOK:
Having Cystic Fibrosis is a Lot Like Being a Superhero
ORDER BOOK

HANDOUTS
click image to download pdf

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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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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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Coping with COVID-19 and an Evolving New Normal

3/26/2020

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TOPIC:
Coping with COVID-19 and an Evolving New Normal

Behavioral Health Integration Program (BHIP) & The Trauma Informed Care Program (T.I.C.) with Dr. Dana Crawford & Dr. Miguelina Germán, Montefiore Albert Einstein College of Medicine

DATE:
Thursday, March 26, 2020

The following documents may assist you and your family as you manage life during the COVID-19 pandemic. We know this is a difficult time for many families - especially those with CF. Please take a moment and review the resources below.

nasp helping children cope ... by api-451901542

stress-management-tips - pa... by api-451901542

covid resource list by api-451901542

care for the caregiver duri... by api-451901542

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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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The Importance of Total Health

2/8/2017

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Archived Event

Topic:
The Importance of Total Health: Mental Health Initiatives at UNC


Date
:
Wednesday, February 8, 2017


Guest Speakers:
Mary Beth Prieur, Ph.D.,
Psychologist,
UNC Mental Health Coordinator


Lynne McGibbon, MSW,
UNC Social Worker

*No notes or recordings are available from this workshop

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