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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". 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:
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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.
Review the slides below for help coping with the emotion rollercoaster: Our 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:
Click the button below to download slides from the workshop. If you would like to participate in the live discussion, be sure to register for our next workshop in January.
2023 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.
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):
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: 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.
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