March PTF Meeting Overview

March PTF Presentation We had a very informative presentation on Nutrition, Body Composition and Eating disorders on March 21, 2019. We appreciate those who were able to attend.┬áIf you were unable to attend, watch the presentation below:   Join us for the next PTF meeting! Please join us April 4, 2019 from 1-3 p.m. EST […]

Newsletter Volume 10

Governance Board Updates During the March meeting, attendees listened to project updates. The Eugene Washington Award team is working on developing a training program and plans to start getting PTF feedback in May. The Impact Award team reviewed PTF survey results. Results indicate that women with CF would like meetings held during the summer months […]

Newsletter Volume 9

Governance Board Updates CFReSHC is committed to patient-engaged research through partnerships between women with CF, researchers and advocates. The Governance Board meets monthly to discuss sexual and reproductive health issues with the goal of prioritizing the voices of women with CF in all research and action decisions. We utilize this newsletter, our website and our […]

Newsletter: Volume 7

Governance Board Updates The GB reviewed the results from the PCORI Needs Assessment survey. The nearly 200 participants included people with CF, caregivers, psychologists, physicians, researchers, research coordinators, respiratory therapists, social workers, nurses and dietitians. While most healthcare providers and nearly half of caregivers and CF patients were aware of patient-centered outcomes research, very few […]

Newsletter: Volume 6

Governance Board Updates CFReSHC offers women with CF the opportunity to participate on the Governance Board, Research Advisory Panel and Patient Task Force as Patient Partners to develop research projects that directly respond to the questions faced by women with CF. As we enter our third year, CFReSHC is looking for women with CF who […]

Newsletter: Volume 5

Governance Board Updates The Governance Board met May 4, 2018 with eight members present. This months ice breaker asked participants to identify their favorite childhood activity. Answers ranged from bike riding to swimming to being outside. The ice breakers help participants get to know each other since all of the meetings are by phone or […]

Newsletter: Volume 4

Governance Board Updates The Governance Board met April 6, 2018 with eight members present. Previously, the group agreed to begin each meeting with an ice breaker to help members get to know each other better. This meeting started with this feature and each member discussed their favorite food. Answers ranged from the native Chicagoan claiming […]

Newsletter: Volume 3

Governance Board Updates The Governance Board (GB) met on March 9, 2018 with seven members present. Previously, the group opted to begin using Slack to help email management. Some members were part of a trial period and found the format helpful for internal communications. As a result, a tutorial was provided for all members during […]

Newsletter: Volume 2

Governance Board Updates The Governance Board (GB) met on February 2nd, 2018. We discussed group norms, subcommittee updates, and voted on changes to our governance document. In our group norms discussion, we chose to make the following changes 1) use less technical language and make room at all meetings to ensure everyone understands what is […]

Newsletter: Volume 1

Governance Board Updates The Governance Board (GB) met on January 5, 2018 with nine members present. Subcommittee updates were first on the agenda. The Governance Board has three subcommittees: Group Norms, Meeting Planning and Communications. The Communications committee is focusing on ways to announce upcoming meetings. CFReSHC will post items on Social Media outlets: Facebook, […]

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