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to donate to Breathing Room
Breathing Room has lots in store
for the year. If you would like to share your personal
stories, news items or poetry with us, please contact:
us at: info at thebreathingroom.org.
Stories, Poems
and opinions of participants are their own, and not necessarily
those of the Breathing Room organization.
Please visit
cfmessageboard.com to connect with members of the CF
community online.
Breathing Room
facilitates candid and open
communication between adults with Cystic Fibrosis,
supports the development of a community of adults with CF
and provides education and insight for families, caregivers,
and medical professionals who impact our lives.
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Robin Modlin
Robin Modlin became the Art Director for Caregiver Stories in 2002. She has been a long time volunteer in the cystic fibrosis community since the diagnosis of her daughter, Anna age 21. Robin served on the board of CFRI for 10 years, is a fabric and mosaic artist, and was a chaplain resident at Lucille Packard Children’s Hospital from 1999 –2000. Being a part of this project gives her another opportunity to reach out to families and people who care to provide support and help in finding meaning to their CF experience.
Robin is married to Doug and is the mother of Sara, 14 and Anna, 21 who has CF. CF became a focus of her life as it often does when a child is diagnosed. Both she and Doug have dedicated many volunteer hours to education, support and fundraising for research. For many years Robin has been greatly moved by the Breathing Room exhibit. When viewing the exhibit she was especially struck by how unique this part of her life is and how difficult it is to share it with others who do not have similar challenges. She was aware that so many of the challenges are unseen and the mom’s and dad’s are quiet heroes struggling to keep their children alive. Caregiver Stories has given her a chance to share a little of that struggle with others with the hope that there will be greater understanding and it will give some support and encouragement to other mom’s and dad’s who are these kids greatest caregivers.
Stories
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