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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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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:
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Cystic Fibrosis Wacky Juice Machines
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RECOMMENDED BOOK:
Having Cystic Fibrosis is a Lot Like Being a Superhero
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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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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.
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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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