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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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Your CF Story: How to Talk About CF

2/3/2025

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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 "telling your CF story".
As you begin your CF journey, you may receive questions from family, friends, and other about what you are going through. It's important to have a plan about what you want to share.

This workshop helps you to reflect on your story about your child's birth and diagnosis, and decide who, how, and when to tell others your story.

When thinking about "Sharing Your Story", consider:
  • Whom do you want to tell?
  • What (and how much) do you want to tell?
  • Why would you want to share your story?
  • How do you want to share your story?

Review the slides below for help telling your CF story!

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This complete session is available in Module 2 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 link 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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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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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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HANDOUTS
click image to download pdf

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Legal Rights of Children and Adults with CF

5/4/2023

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TOPIC:
Insurance 101: Insurance Basics for People with CF

WORKSHOP DATE:
Thursday, February 16, 2023

GUEST PRESENTER:
Presented by Beth Sufian

Beth Sufian is an attorney and partner in the law firm of Sufian & Passamano, LLP.  Beth is a 57 year old adult with CF who has spent the past 30 years of her life advocating for the rights of people with CF in the United States.

Beth is Director of the CF Legal Information Hotline which receives 10,000 calls a year from people with CF, their family members and the CF Care Centers across the country.

Beth is also director of the CF Social Security Project which represents people with CF in Social Security disability and SSI applications as well as Social Security Continuing Disability reviews at no cost to the individuals thanks to funding from the CF Foundation.

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DOWNLOAD SLIDES
In this workshop presentation, Beth provides information on how a child or adult becomes eligible for Social Security monthly payments and the health insurance that comes along with eligibility.

Beth also discussed the rights of children with CF in education and the rights of adults and parents in employment, as well as ways to access health insurance coverage.
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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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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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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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DISCLAIMER: The information published on this website or in any connected material is the opinion of Jennifer Webber and CF Parent Education Group only, and is not meant to replace professional medical or mental health care. Persons should always seek the advice of a medical professional when making decisions about personal healthcare or treatment.

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