Vol. 13 Nov 2019


Governance Board

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 Research (PCOR) is compensation for all participants--including Patient Partners. As a result, we are actively pursuing applicable grants. Our hope is that the Patient Centered Outcomes Research Institute receives funding from Congress to provide additional grant opportunities. Members of CFReSHC are encouraged to contact their members of Congress to support current PCORI renewal legislation pending in both chambers. 

Research Advisory Panel

The Research Advisory Panel (RAP) is comprised of CFReSHC GB members, 3 OB/GYN physicians, 5 Researchers, 1 Adult Pulmonary Physician, 1 Genetic Counselor, and 4 Patient-Partners. The goal of the RAP is to translate the over 60 sexual and reproductive health (SRH) questions developed by the Patient Task Force into viable research studies. The RAP met in November to discuss next steps. Moving forward, members of the CFReSHC Grants Committee will help match researchers with grant opportunities with the goal of establishing working groups to write letters of intent and submit grant applications. In addition, CFReSHC is actively recruiting research community members interested in conducting SRH research. Researchers do not have to specialize in CF care and do not have to be female. Interested candidates email Emily Godfrey at:      

Patient Task Force

The PTF has started its second year funded in part with an Impact Award from the CFF. The first meeting was held Nov. 10, 2019 to discuss the upcoming resource guide. Members of CFReSHC will be writing a CF Sexual and Reproductive guide for providers by patients to address knowledge gaps and to improve standards of care. We have 20 PTF members serving as writers and 5 PTF-LC members serving as team leads. Please note, we have updated the chapters for the guide since our last newsletter. The first chapter we will cover is incontinence on Dec. 10, 2019. The other topics we will cover over the coming year are: Fertility, Family Building Choices, Contraception, Vaginal Health, Sexual Function, Incontinence, Pregnancy, Parenthood, Hormones, Menopause, and Body Image.   



Women with CF are welcome to join us Dec 10, 2019 from 1-3p EST to discuss Incontinence. Physical Therapist and Pelvic Floor Specialist Beth Taylor, (Univ. of Cincinnati) will discuss ways to treat incontinence, or urine leakage. Urine leakage can happen when you cough, laugh or sneeze, and when you do airway clearance and PFT's. A 2015 study revealed that 68% of women with CF over the age of 12 experience incontinence but 50% do not seek treatment. Incontinence happens in women with CF due to the increased intra-abdominal pressure caused by coughing. If you have struggled with incontinence and/or would like to learn more about incontinence treatment, please email: for log-in details.
     We want to hear your stories!

CFReSHC @ Conferences


GB members Pat Walker, Emily Godfrey and Elinor Schwind attended the NACFC conference in Nashville in Oct. 2019.
Co-Founder and Primary Investigator of the Eugene Washington Award (EWA), Emily Godfrey stands in front of one of two CFReSHC posters presented at NACFC.
Emily Godfrey (in person) and Sandy Sufian (via Zoom) conducting a Roundtable discussion on the importance of PCOR and the impacts of CFReSHC at NACFC.


GB members and Patient Partners, Laura Mentch and Sandy Sufian stand in front of the Impact Award (IA) poster presented at the NAPCRG conference in Toronto in Nov. 2019. Sandy, CFReSHC co-founder, is the Primary Investigator (PI) for the IA. 
Laura Mentch stands in front of the EWA poster at NAPCRG. In total, CFReSHC had 4 posters on display at NAPCRG.
EWA Research Assistant Erin Thayer, a MPH student at the University of Washington and Emily Godfrey stand in front of Erin's poster at NAPCRG.
CFReSHC Research Advisory Panel members Andrea Roe (far left) joins Governance Board members Sheila Mody, Molly Pam (Patient Partner), Pat Walker and Emily Godfrey who held a session at the Society of Family Planning conference in Los Angeles in Oct. 2019.
This is a handy sign for your door or a good graphic to share with friends and family this holiday season. It is important to remember that little things can help keep germs at bay during family functions or gatherings with friends. This was designed and shared by Morgan Polen.  Great idea Morgan - thank you for sharing!!!
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