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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:
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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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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Managing the Medication Madness

4/26/2021

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Enjoy the video presentation, and scroll below for links to recommended apps and websites to help you manage your medications!

TOPIC:

Managing the Medication Madness
Learn tips for organizing and keeping track of medications, the various specialty pharmacies, and getting a system for refilling them so you can save time. Also, learn about programs for CF medications that offer nutritional supplements at no extra cost!

DATE:
Thursday, April 22, 2021

GUEST SPEAKERS:
Clinical Pharmacists, UNC Chapel HillCameron McKinzie, Pharm.D. & Charissa Kam, Pharm.D.

Video Recording of Workshop:
DOWNLOAD SLIDES

CF Programs and Patient Assistance

HFealthwell Foundation®
  • CF Treatments Fund
  • CF Vitamins and Supplements Fund
www.healthwellfoundation.org

Creon® CareForward
www.creon.com/cfcareforward

Live2Thrive (Zenpep®)
www.live2thrive.org

Vivus Healthstore (Pancreaze)
store.vivushealth.com

Vertex GPS
www.vertexgps.com

Pulmozyme
www.pulmozyme.com

MedActionPlan
medactionplan.com

FREE APPS:

MyMedSchedule
medactionplan.com/mymedschedule

Mango Health
www.mangohealth.com

Medisafe
www.medisafeapp.com
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FROG AND TOAD Tentatively Go Outside After Months In Self-Quarantine

10/30/2020

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Recently, my friend Marla shared a "Frog and Toad Adventure" that was written about the pandemic. It made me laugh. And my daughters. Hard, at parts. Music to my ears. This pandemic hasn't taken away our joy, but some day it seems that laughter is lacking.

Frog and Toad are great — we remembered fondly, my daughters and I, when they each wrote a "Frog and Toad" adventure of their own for an assignment in middle school. Lighter days then.
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In many ways, this time reminds me of the younger days of homeschooling. Our days were structured with medical, school, and household regimes. I planned out the meals and did the shopping alone to minimize germ exposure. Now, I plan out the meals, place my orders online, and utilize curbside pickup, grateful for those who shop for me. No more "last minute" trips to the store; with little impulse buying it is good for the budget.

I'm not teaching my girls, anymore — they are responsible for their own learning, for communicating with their college professors. My husband and I are both working from home, so the four of us are spread out in our different "work" zones. Our dog, Oliver, invades most of the zones, when he is not sleeping, happy to have options. Last fall, he dropped in our empty house and then followed me everywhere. Now we has four of us to follow. He is always a bright spot in our day.

Reading "Frog and Toad", hearing the girls' laughs during this serious time of uncertainty, and Oliver's frequent wags, made my day.

Here is a link for anyone interested in reading a light-hearted view of venturing out, cautiously.
READ FROG AND TOAD
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Growing Up With a Sibling Who Has CF

3/7/2019

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TOPIC:
Growing up with a sibling who has CF

DATE:
Thursday, March 7, 2019

GUEST SPEAKERS:
A small panel of young adults who have a sibling with CF

Recording of this workshop available:
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