CFReSHC Newsletter!
Thank you for taking a few minutes to see what we have been up to! You can read last months issue of the CFReSHC newsletter here.
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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 being said and has an opportunity to ask questions 2) develop more mechanisms to collect feedback from all CFReSHC members and 3) transition all of our Governance Board communication to Slack versus email. Our sub-committees gave the following updates: The Meeting Planning Committee announced March meeting topics and dates. The Communications committee announced the newsletter as a new way to improve CFReSHC communications and talked about focusing on keeping current CFReSHC members engaged instead of looking for new members while our future funding situation is still unclear. The Governance Committee outlined updates to the governance document including definitions for sub-committee chair roles, onboarding processes for new CFReSHC Governance Board members, and specifics on compensation and active involvement. The Governance Board voted to accept all changes, and now it's your turn. We would love your feedback on the Governance Document.
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On February 8th, Communications Committee Chair Georgia Brown, and Communications Committee member, Kelly Gilmore were invited by our technical assistance office provide a presentation about our collaborative to other Patient-Centered Outcomes Research Institute Pipeline to Proposal awardees. Georgia and Kelly presented the CFReSHC research idea generation process as seen below, as well as methods we use to engage patients in every step of our research generation process.
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ICYMI: Dr. Raksha Jain, from the University of Texas Southwestern, discussed hormones at the Feb. Patient-Task Force meeting. She presented current theories about how hormones affect women with CF throughout their lives. Her presentation was recorded for those unable to attend. A link was sent via email to all Patient Task Force members.
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Research Advisory Panel Updates
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The February RAP meeting provided a forum for the members to discuss their current research and areas of interest for future research projects.
- Traci Kazmerski is a pediatric pulmonologist at Harvard who is interested in SRH in females with CF. She is developing SRH training for CF teams and developing a screening tool for incontinence. She hopes to work on a contraception decision aid and reproductive life planning tool.
- Sigrid Ladores is a nurse practitioner at UAB who is interested in reproductive health for CFers and is interested in projects that focus on fertility preservation.
- Emily Godfrey is a Family Medicine physician at UW, who focuses her research on contraception and fertility in CF. In the future, she hopes her projects will tackle CF and hormones.
- Andrea Roe is an OB/GYN at Penn researches the effects of contraception use in CF.
- Courtney Trout is a social worker in NJ who focuses on family planning for CF patients and how to coordinate pregnancy care between the CF clinics and OB/GYNs.
- Raksha Jain is CF physician at UT Southwestern who hopes to find out how hormones affect CF patients.
- Sandy Suffian, a woman with CF, is a disability historian at the University of Illinois Chicago. She is interested in hormones especially in the peri-menopause and menopause stage of the CF life cycle.
- Patricia Walker is a CF physician in NYC who is also interested in the clinical effects of hormones on CF patients to reduce overmedication.
- Laurene Tumiel-Berhalter, University of Buffalo, is an epidemiologist and community-engaged researcher who works with people with chronic illness and disability.
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