An annual retreat for mothers of children of all ages with cystic fibrosis (CF) — virtual again this year — will take place on Saturday, May 1, giving these moms a space in which to connect and refuel.
Called “Embrace,” the retreat is hosted by Cystic Fibrosis Research Inc. (CFRI) and runs from noon until 8 p.m. EST. Short preparatory workshops are set for April 17 and 24 at times to be announced.
The May 1 event, limited to 30 moms, is fully booked. But those interested may email Sabine Brants at [email protected], asking to be placed on a wait list.
Art workshops and yoga and journaling sessions — in addition to cystic fibrosis education and resources — are part of the planned events. Supplies needed for all these activities, including the art and journaling, will be sent to participants in advance, and there is no charge to attend.
“CRFI hosts this annual retreat for mothers of children and adults with cystic fibrosis in recognition of the vital role that mothers have in the care of their loved ones,” the organization states in its announcement.
A study conducted in Ireland and published in 2017 reported that, compared with fathers, the mothers of young children with CF do most of the caregiving. The quality of life questionnaire upon which the study was based asked parents about the positive and negative aspects of caregiving. Some 50% of the fathers reported no mental health issues, and 70% no physical health concerns. Among mothers, 36% felt their mental health was good and 62% had no physical health worries.
More mothers than fathers also reported having problems combining care tasks with daily activities. And, the study noted, caregiving burden was felt to increase as children grew older. Still, the vast majority of moms and dads felt a sense of fulfillment in their care-related tasks, with only 5% of mothers disagreeing (reporting no fulfillment) and 8% of dads.
Overall, the survey pointed to a need to support parents of children with CF, especially mothers, the research team concluded.
Vertex Pharmaceuticals, AbbVie, and Gilead Sciences are sponsoring the CRFI’s Embrace retreat.
CFRI, founded in 1975 by families of CF children, is a nonprofit organization working to advance CF research and to be a source of education, advocacy and support for all those affected by the disease.
“This retreat was life changing! It is so wonderful to be with other women who understand the challenges we face raising our children with CF,” said one mother an adult daughter with CF and a retreat participant.
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