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All Things Cystic Fibrosis
Past Workshops & Posts by CF Parents

Legal Rights of Children and Adults with CF

5/4/2023

4 Comments

 
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.
4 Comments

Insurance 101: Insurance Basics for People with CF

2/16/2023

0 Comments

 
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
0 Comments

Scholarships, Grants & Other Benefits for People with CF

10/9/2021

0 Comments

 
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
0 Comments

Back-to-School Helpful Nutrition Tips for Snacks and Lunches

8/23/2021

1 Comment

 
TOPIC:
Back-to-School Helpful Nutrition Tips for Snacks and Lunches

DATE:
Thursday, August 19, 2021

GUEST SPEAKERS:
Kimberly Stephenson, MS, RD, CSP
Kely Baumberger, PD, LDN, CSP

Are you getting ready to send your child with CF back to school? Want some great tips and hacks for lunch and snacks? Be sure to watch this informative and helpful workshop with two dietitians!

Recording of Workshop Available Below:
*Scroll below video to download slides from presentation!
DOWNLOAD SLIDES
1 Comment

Importance of Staying Active With CF

1/10/2019

0 Comments

 
Topic:
The importance of staying active throughout childhood, the teen years, and beyond. Also, the value of eating healthy high fats.

Date:
Thursday, January 10, 2019

Guest Speakers:
Brooke Guthrie
20 year old, junior at High Point University
Part-time Physical Therapy Technician, Personal Trainer at HPU
Also happens to have CF

Rebecca Byrd, PT, DPT, CCS
Duke University Health System
Cardiopulmonary Rehabilitation

Recording of workshop available:
0 Comments

Transition to College

4/5/2017

0 Comments

 
ARCHIVED EVENT

TOPIC:
The Transition to College – Perspectives from a young adult with Cystic Fibrosis

DATE:
Wednesday, April 5, 2017

GUEST SPEAKERS:
Magnolia Long,
Adult with CF


*No notes or recordings available from this workshop.
0 Comments
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