Watch and learn about CF topics.
Co-hosts Laura Bonnell (The Bonnell Foundation: Living with cystic fibrosis) and Beth Vanstone (CF Mom/Advocate in Canada) talk to Author, Bijal Trviedi about the behind the scene of her book. It was 8 years in the making.
During the recording of this webinar Laura was in London, England visiting her daughter. Beth was in Canada and Bijal at her home in Washington, D.C.
Thanks to everyone who joined the webinar live and asked lots of questions or made lovely comments. You’ll thoroughly enjoy this webinar.
All your questions about how to apply for our education scholarships are answered in this webinar. Previous scholarship winners were on hand to help you navigate the process! We hope students with cystic fibrosis will apply for our college, trade school and community college scholarships! If you have cystic fibrosis, you qualify! This is for undergrads only. You can apply your senior year of high school.
We will talk about the ways that policymakers and payers make decisions about whether or not to reimburse you and about covering your treatments. The system being proposed to state and federal policymakers was put forth by a self-appointed group that uses Quality Adjusted Life Years (QALY). The process for valuing treatments using QALYs puts a lower value on lives lived with a disability or chronic disease. We will give you the information you need to protect yourself, your children and others facing these discriminatory practices. We will also cover the existing civil and disability rights laws that have created precedent against using QALYs in public health programs, as well as threats at the state and federal level for incorporating the use of QALYs.
Let’s gather and unwind together. The pandemic has increased the stress family’s in the Rare Disease community are experiencing.
Please join The Bonnell Foundation: Living with Cystic Fibrosis as we present a gathering on zoom that will help you Manage stress and Promote self-care. We all need some tips on how to do this!
We’re honored to have Kristen Reese, Project Director of the Michigan Family to Family Health Information Center lead the discussion. Reese is a great friend of the rare disease community.