<![CDATA[CYSTIC FIBROSIS PARENT EDUCATION - CF BLOG]]>Thu, 02 Apr 2026 12:58:00 -0400Weebly<![CDATA[Speaking Up and Asserting Your Expertise]]>Fri, 26 Sep 2025 12:02:59 GMThttps://www.cfparenteducation.com/blog/speaking-up-and-asserting-your-expertiseOur 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".
There will be times when you need to speak up for your child's rights or care needs. It can be difficult to challenge what medical professionals are telling you. This workshop focused on learning a process for developing an advocacy plan and develop skills in speaking up for your child and family.

Review the slides from the workshop below:

The complete session is available in Module 6 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.
]]><![CDATA[Coping with the Emotional Rollercoaster]]>Mon, 24 Mar 2025 23:45:16 GMThttps://www.cfparenteducation.com/blog/coping-with-the-emotional-rollercoaster
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:

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.
]]><![CDATA[Your CF Story: How to Talk About CF]]>Mon, 03 Feb 2025 23:09:24 GMThttps://www.cfparenteducation.com/blog/your-cf-story-how-to-talk-about-cf
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
]]><![CDATA[Newly Diagnosed Children with CF]]>Thu, 24 Oct 2024 12:21:25 GMThttps://www.cfparenteducation.com/blog/newly-diagnosed-children-with-cfOur 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
]]><![CDATA[2023 NACFC Highlights]]>Mon, 11 Dec 2023 21:51:07 GMThttps://www.cfparenteducation.com/blog/2023-nacfc-highlights2023 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
]]><![CDATA[How to Find Support with CF Peer Connect]]>Sat, 23 Sep 2023 23:24:21 GMThttps://www.cfparenteducation.com/blog/how-to-find-support-with-cf-peer-connectDiscover 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):
]]><![CDATA[The Importance of Mental Health When Living With a Chronic Disease]]>Tue, 20 Jun 2023 20:31:47 GMThttps://www.cfparenteducation.com/blog/the-importance-of-mental-health-when-living-with-a-chronic-diseaseThe 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


DOWNLOAD SLIDES:

RECOMMENDED BOOK:
Cystic Fibrosis Wacky Juice Machines
RECOMMENDED BOOK:
Having Cystic Fibrosis is a Lot Like Being a Superhero
HANDOUTS
click image to download pdf
]]><![CDATA[Legal Rights of Children and Adults with CF]]>Thu, 04 May 2023 12:10:21 GMThttps://www.cfparenteducation.com/blog/legal-rights-of-children-and-adults-with-cfTOPIC:
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.
]]><![CDATA[Insurance 101: Insurance Basics for People with CF]]>Fri, 17 Feb 2023 02:09:17 GMThttps://www.cfparenteducation.com/blog/insurance-101-insurance-basics-for-people-with-cfTOPIC:
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:

]]><![CDATA[NACFC 2022 Research Highlights]]>Tue, 20 Dec 2022 04:49:25 GMThttps://www.cfparenteducation.com/blog/nacfc-2022-research-highlightsTOPIC:
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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