Newsletters (blog)

Volume 17: March 2020

In addition, she wanted to see if patients wanted BMI or another measurement like muscle mass used at their clinic. She found a striking difference between men and women’s responses concerning weight and body image. Women viewed their images much more positively. Through interviews, she found that women had many more factors attributing to weight concerns […]

Volume 16: February 2020

Fourth, as you age, so does your vagina! Be aware that your vagina will change over the years. This is simply part of the aging process! Dr. Susie Baldwin, a women with CF and transplant recipient, joined the discussion to provide more facts on vaginal yeast infections, bacterial vaginosis and sexually transmitted infections. Susie finds that CFRD […]

Volume 15: January 2020

On January 10th, 2020, Drs. Emily Godfrey and Jackie Yeh discussed contraception options for women with CF and dispelled contraception myths. When Emily worked for the CDC, she realized research assessing contraception in CF was lacking. Therefore, she has spent the past three years working with CFReSHC to help women with CF answer the questions […]

Volume 14: December 2019

On December 10, 2019, we had a Patient Task Force meeting on “Incontinence in CF.” Incontinence is the leakage of urine or fecal matter which can be triggered by pulmonary function testing, airway clearance, heavy coughing or exercising. In women, pelvic muscles support the pelvic organs and bladder like a hammock. Frequent intense coughing can weaken […]

Volume 13: November 2019

The 11 members (5 researcher/clinicians and 6 Patient-Partners) of the Governance Board (GB) meet monthly to discuss CFReSHC matters including our current grants: PCORI Eugene Washington Award (ends Aug 2020) and CFF Impact Award (ends Sept 2020). The GB is actively working on funding CFReSHC beyond 2020. One of the key components of Patient Centered Outcomes […]

Volume 12: Summer 2019

We are pleased to welcome two new members to the CFReSHC Governance Board: Pat Walker, MD and Leigh Ann Bray, PhD. The CFReSHC Governance Board (GB) did not take the summer off! We were hard at work applying for grants, attending conferences and submitting conference poster abstracts.

Newsletter: Volume 11

During the April meeting, members discussed activities related to our two active grants, such as finalizing the PCOR training program to share with participating PTF members. In May, the Governance Sub-Committee introduced ground rules to enhance virtual meetings. Members discussed upcoming conferences that CFReSHC members will attend and present at.

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. If 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 […]

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