|
Discover how to connect with a CF Peer for support!  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:  Download Flyer (English/Spanish):
0 Comments
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 HANDOUTS click image to download pdf
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.  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. 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:
PRESENTATION RECORDING: ADDITIONAL TOOLS:
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: 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! Recording of Workshop Available Below: 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: 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.
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: Product Information The below products were referenced in the workshop. Click the image for more information on the manufacturers website.
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! |
Categories
All
Archives
September 2023
|
RSS Feed