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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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Resources
The Breathing Room was developed to serve the Cystic
Fibrosis community. We believe that organ transplant,
palliative care and hospice care are issues that all
people with CF will face, in one form or another, at
some time or another. It is the goal of The Breathing
Room to address these profound emotional issues, not to
offer advice or medical consultation, but to present
personal experiences and resources for community members
to utilize when face to face with such important issues.
Please let us know if there is information you would
like to see listed here, or if you would like to
contribute your own story.
Browse the sites listed below for more information about Cystic Fibrosis and transplants. Let us know of any additions or corrections.
A Week in the Life of...
A week long journal of a young woman with cystic fibrosis and her path through bilateral lung transplantation.
http://slate.msn.com/id/2096727/entry/2096844/
CFF Adult Focus
This new area for CFF and for their site focuses on issues relating to adults with CF, publications, and a list on state adult assistance programs.
http://www.cff.org/adultfocus.htm
Cochrane Cystic Fibrosis and Genetic Disorders Group
The Cochrane Cystic Fibrosis & Genetic Disorders Review Group comprises an international network of health care professionals, researchers and consumers preparing, maintaining, and disseminating systematic reviews of randomised control trials in the treatment of cystic fibrosis and other genetic disorders.
http://www.liv.ac.uk/cfgd
Cystic Fibrosis Research, Inc
CFRI is dedicated to supporting CF families through funding research, education, and support groups. They host an annual education conference for laypersons, as well as a teen and adult day retreat.
http://www.cfri.org
Genentech Heroes of Hope
The Heroes of Hope program was created by Genentech, Inc., to recognize and salute unique individuals with cystic fibrosis who are stars in their own right for striving to live full and productive lives, and for being role models of hope to others, while continuing to manage their healthcare needs.
http://www.pulmozyme.com
Laurens Hope
Hand-made bracelets with medic-alert tags. For anyone who wants a more "fashion forward" way to wear your medical tag...
http://www.laurenshope.com
Memorial Page for Jasmine
This page was put up by Jasmine's mom, Monica, in loving tribute to her daughter. There is a garden of content here, love abounds. Part of the grieving parents webring.
http://mysite.verizon.net/res0bs5v
Norma Plourde Resource List
Norma's personal page with over 1,000 links to CF resources and other respiratory disease information.
http://www3.nbnet.nb.ca/normap/CF.htm
On Our Own Terms
An overview of the Moyers series presented by PBS, On Our Own Terms, Moyers on Dying. Included is
information on a wide variety of issues faced by the dying and their caregivers: pain management, financial,
advanced directives, and palliative care are just a few of the topics addressed.
http://www.pbs.org/wnet/onourownterms
Qozi Poetry Resources
Resource for poetry books, online groups of poets and poetry
http://www.qozi.com/poetry
Root Division
Root Division is a San Francisco based non
profit for artists of varying media. They help
secure affordable studio space for artists, and
in return the artists teach and support art in
their community.
http://www.rootdivision.org
Scott's CF Links
List formed by Margaret Myers and Scott Compton to
other CF-links on the web. Well-rounded list, in case you'd like to know
just how many CF sites are out there, and what they're about.
http://www.asbestos.org/scott/cf.html
Solvay Healthcare, Ltd. (CFRC)
The Cystic Fibrosis Resource Center - a
detailed information resource for cystic fibrosis patients, parents, doctors
and other carers.
http://www.cysticfibrosis.co.uk
Sophias Garden Foundation
Sophia's garden is a website of love and healing, dedicated to one little girl living with Niemann-Pick Disease, TypeA.
http://www.sophiasgarden.org
Stanford Hospital Cystic Fibrosis Center
Stanford's site contains information about the center, including contact
information, as well as new community projects going on (like books and
outreach programs) and current and future clinical trials related to
Cystic Fibrosis. The site is maintained one of the Stanford CF clinic
nurses and web content is submitted by the staff. This is a well-rounded
site with all sorts of interesting information.
http://cfcenter.stanford.edu
USACFA
Usacfa has just launched their new site, which is an online resource for their newsletter, CF Roundtable. It is choc full of announcements and interesting information, by for and about adults with cf.
http://www.cfroundtable.com
Zen Hospice Project
Located in San Francisco, California, the Zen Hospice Project provides hospice and palliative care as well as
volunteer and training programs for caregivers. The site provides information on upcoming events at the Zen
Hospice, educational material on end of life issues, and links to other resources.
http://www.zenhospice.org
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