CF Support
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Breathing Room - The Art of Living with CF http://www.thebreathingroom.org/ CF Infants and Toddlers http://health.groups.yahoo.com/group/CF_Infants_Toddlers/ A place to share information and seek support if you are the parent or caregiver of an infant or toddler with Cystic Fibrosis. CF_LiverDisease http://health.groups.yahoo.com/group/CF_LiverDisease/ A support Group for anyone dealing with Cystic Fibrosis and Liver Disease, or those dealing with CF and GI issues. CF Message board http://www.tdl.com/~barky/cfboard/wwwboard.html CF Roundtable http://cfroundtable.com/ Provides information to adults with CF on the nature and progression of the disease and on the latest treatments and research on fighting it. Provides a forum for adults with CF to communicate to each other. CF Solutions, Inc. http://www.cf-solutions.org/ Conncoll International Cystic Fibrosis Support Group http://cf.conncoll.edu/index1.html Gives support to those involved with the disease and provides a forum for the discussion of topics relative to Cystic Fibrosis. Crataegus http://health.groups.yahoo.com/group/crataegus/ A non-medical group interested in exploring the possibilities of crataegus and it's value as a therapy. Cystic Fibrosis.com http://www.cysticfibrosis.com/ Online support for people with CF, their families, and caregivers. Cystic Fibrosis 4 Christians http://health.groups.yahoo.com/group/CF_4_Christians/ Support group with religious affiliations. Cystic Fibrosis Parents http://groups.yahoo.com/group/cfparents A place to discuss issues specific to raising children who have been diagnosed with cystic fibrosis... a place for parents of children with cf to come to for support and information. Cystic-L http://www.cystic-l.org/index.htm Cystic-L is an online service dedicated to the exchange of information and support specific to Cystic Fibrosis. DailyStrength http://www.dailystrength.org/support/Lungs_Respiration/Cystic_Fibrosis/ An online support group for cystic fibrosis. Healingwell http://www.healingwell.com/pages/Cystic_Fibrosis/ Community, Information, Resources on Diseases, Disorders and Chronic Illness. Heroes of Hope – Living with CF http://www.heroesofhope.gene.com/heroesofhope/ Jerry Cahill Cystic Fibrosis Podcast http://www.jerrycahill.com/ Parenting Children with Health Issues http://www.parentingchildrenwithhealthissues.com/index.html Sharktank Research International http://health.groups.yahoo.com/group/sharktank/ Online forum to promote research, share experiences, and synthesize information with the objective to improve the conditions of cystic fibrosis. The Well Spouse Association http://www.wellspouse.org/ Provides support and information to the well spouses of the chronically ill, and educates human services professionals and the public about the needs of spousal caregivers and their families. YOUNGLUNG http://health.groups.yahoo.com/group/YOUNGLUNG/ An Email Support Group for young people, ages 12- 40ish, living with the challenges of Chronic Lung Conditions.
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The Importance of Education
I have been meaning to e-mail you since Claire started Kindergarten to let you know how helpful the CFRI booklet "Cystic Fibrosis in the Classroom" was for us. I gave a copy to her teacher, the school principal, the school nurse, and the district nurse to read before we met to set up her 504 plan. I also used a folder I received from the last CFRI conference by Lisa Yourman on what to put in a 504 plan. It was a great help to have the resources to guide me through the process. Setting up her 504 plan went without a hitch! Claire's teacher, school administrators, and nurses were extraordinarily kind and have been willing to help us in any possible way. Thanks so much for all the great work you do at CFRI. Having resources like this makes such a tremendous difference, and I really appreciate all you do. Lou Ann AlexanderParent of Child with CF |
