161. Cystic Fibrosis Carrier Screening All rights reserved. 00029297/92/5106-0027$02.00. Statement of The American Society of Human Genetics on cystic fibrosis Carrier Screening. http://genetics.faseb.org/genetics/ashg/policy/pol-10.htm

Reprinted for private circulation from The American Journal of Human Genetics Vol. 51, No. 6, December 1992 Am. J. Hum. Genet. 51:1443-1444, 1992 Address for correspondence: Walter E. Nance, M.D., Ph.D., Department of Human Genetics, Medical College of Virginia, Box 33, MCV Station, Richmond, VA. Address for reprints: Elaine Strass, Executive Office of ASHG 9650 Rockville Pike, Suite 3500, Bethesda, MD 20814. Statement of The American Society of Human Genetics on Cystic Fibrosis Carrier Screening The identification in 1989 of the cystic fibrosis (CF) gene and its most common mutation immediately raised the possibility of CF carrier detection by DNA analysis. The American Society of Human Genetics (ASHG) issued a statement recommending that CF carrier testing should be made available to individuals with a family history of CF (American Society of Human Genetics Board of Directors 1990). It was also stated that screening of individuals or couples in the general population should not be offered until the rate of CF carrier detection improves. An additional prerequisite emphasized the need for the establishment of effective educational and counseling programs consistent with previous widely accepted principles. An NIH workshop, convened in February 1990, reached similar conclusions (NIH Workshop on Population Screening for the Cystic Fibrosis Gene 1990). The statement of the workshop was endorsed by ASHG. Since then, substantial progress has been made in defining the mutational basis of the disease and the basic biochemical defect. As recommended by the NIH workshop, pilot projects to study the complex issues involved in offering CF carrier detection to the general population of the United States have been initiated, but substantive results are not anticipated for at least 2 years. Other pilot projects are underway in Canada and Europe. Interest in CF carrier screening has expanded in the medical community, the biotechnology industry, and the public. Accordingly, the ASHG Ad Hoc Committee on Cystic Fibrosis Carrier Screening reassessed the issues surrounding CF carrier detection.

162. Cystic Fibrosis? Welcome To Brandon's World Site about a boy with CF. http://personalpages.tds.net/~dhargrov/

With your help we can find a cure H ELLO. My name is Brandon Hargroves. I have Cystic Fibrosis, which is a very serious disorder that affects my life. It is genetic so you can't "catch" it. At birth I had three surgeries and had about a third of my intestines removed. I have had 6 sinus surgeries and will soon have another one. I take many medicines. I can't digest my food without my enzymes. I spend between 2 to 3 hours each day doing breathing treatments. I take lots of medicines and antibiotics. I take Pulmozyme and TOBI, which are both VERY expensive. I have had many IVs for about 2 weeks each - both at home and the hospital. I got a port-a-cath in March of 2001. Someday I may have to have a lung transplant. I am trying to save up money for my medical expenses. If you would like to help please email my mom or dad at our email address and we will email you back how you can help. Thank you for reading about "Brandon's World". Don, Sherry, and Brandon Hargroves: dhargrov@tds.net Learn more about Cystic Fibrosis: Cystic Fibrosis (CF) is the most common lethal genetic disorder in the United States and there is no cure. It affects children and young adults causing chronic infections. If you would like to help find a cure or learn more about CF you can contact the following sources:

163. Pulmonary Medicine At UNC - Cystic Fibrosis Center The UNC cystic fibrosis Pulmonary Research and Treatment Center is a large, multidisciplinary group focused on the pathogenesis and therapy of cystic fibrosis http://www.med.unc.edu/cystfib/CFcent.htm

The Department Faculty and Staff Clinical Education The Hunter-Barnett Learning Resource Center Pulmonary/Critical Care Fellowship Case of the Month Informational Links and Feedback Areas and Programs Clinical Lung Center Cystic Fibrosis Center Clinical Research Studies Asthma COPD:Emphysema/ Chronic Bronchitis Critical Care Lung Cancer Lung Transplantation Primary Ciliary Dyskinesia (PCD) Pulmonary Hypertension Pulmonary Rehabilitation Sarcoidosis Sleep Disorders ... Home Page Welcome! Richard C. Boucher, M.D., Director Information about Cystic Fibrosis The treatment for CF is based upon the clearance of thick airway secretions, using chest percussion (e.g. clapping hands on the back and chest), inhaled treatments, and exercise. Antibiotics that fight the particular bacteria found in CF are used when the amount of infection in the chest becomes problematic, and may be administered by mouth, inhaled, or intravenously. The maintenance of proper nutrition is also essential, and requires a high calorie diet, supplementation of certain vitamins, and the use of enzymes that help to digest meals. Although no cure for CF exists today

164. Canadian Cystic Fibrosis Foundation Toronto And District Chapter Works to raise funding for cystic fibrosis research and care, and lists upcoming events, describes the disease's symptoms and treatments. http://www.ccfftoronto.ca/

165. Tildonk Fights Cystic Fibrosis Site by a family from Belgum with a son with CF. Information on support from their community and fundraising efforts. In English. http://users.skynet.be/tildonk_tegen_muco/tildonk1.htm

Tildonk Fights Cystic Fibrosis Home Tildonk Tegen Muco [ Tildonk Fights Cystic Fibrosis ] Tildonk Combat la Muco MailBox Sponsors Best experienced with Tildonk, is a small village in Belgium, situated between the cities of Mechelen and Leuven is part of Haacht. It has about 2,500 inhabitants. Under the impulsion of Tom and Sabine, parents of a cystic fibrosis patient, "Tildonk tegen Muco" came to life. In 1996, the first drive for the benefit of cystic fibrosis patients was a big success. How did "Tildonk tegen Muco" came to life? When, in November 94, we learned that our son Jurgen was affected with cystic fibrosis we realized, through questions from different persons, that few knew about that disease. Only those with medical background and closed affected friends knew what is was all about. When the national press published our story at the end of 1995, our goal was outreached. The biggest goal with " Tildonk tegen Muco " was and still is to familiarize people with what cystic fibrosis really is. The money received from all activities in 1996 went entirely to : $4,750 went to the "Belgische Vereiniging voor de strijd tegen Mucoviscidose" (Belgian Association for the fight against cystic fibrosis), who will use the money to support further research.

166. Reuters Health Information (2004-05-14): Nonaerobic Exercise Helps Kids With Cys Virtual Hospital The International Thoracic Teaching Resource cystic fibrosis. Jeffrey collapse. cystic fibrosis icon gif MRI also clearly shows peribronchial thickening and mucoid impacted bronchi. http://www.reutershealth.com/archive/2004/05/14/eline/links/20040514elin022.html

Nonaerobic exercise helps kids with cystic fibrosis Last Updated: 2004-05-14 16:31:49 -0400 (Reuters Health) NEW YORK (Reuters Health) - Children with mild-to-moderate cystic fibrosis, a serious congenital disease that affects the lungs and other organs, appear to be benefit from an nonaerobic exercise program, new research suggests. Such exercise seems to improve their quality of life. In contrast to aerobic exercise, nonaerobic exercise doesn't cause an increase in the heart rate or breathing rate. A common example is weight lifting. Although the benefits of regular aerobic exercise have been demonstrated in children with cystic fibrosis, nonaerobic exercise in this population has not received much attention, the authors write in the medical journal Chest. Dr. Janjaap van der Net and colleagues from University Medical Center, Utrecht, the Netherlands, randomly assigned 20 patients to a training group or a comparison group. Patients in the training group trained 2 days per week for 12 weeks, with each session lasting 30 to 45 minutes. Nonaerobic activities in the training program lasted 20 to 30 seconds. Patients in the comparison group were instructed not to change their normal daily activities. The researchers assessed body composition, lung function, muscle force, physical activity, aerobic and nonaerobic exercise performance, and quality of life at the end of the training program and after a 12-week follow-up.

167. U.S. Study Backs Early Check For Cystic Fibrosis CNN http://cnn.com/2001/HEALTH/01/09/health.cf.reut/index.html

168. Jake's Cystic Fibrosis Page cystic fibrosis Page with the CFAM newsletter. http://www.angelfire.com/mo2/cf/index.html

var cm_role = "live" var cm_host = "angelfire.lycos.com" var cm_taxid = "/memberembedded" Jake's Cystic Fibrosis Page Please Visit My Links Page My Links My Bio CFAM Newsletter My Little Nephew Fritz ... CF Chat Room Hello my name is Jake Shasserre. I have had Cystic Fibrosis ever since I was born. This page was made to the help people learn what the diesease is and how to fight it. Its been a while since i updated so i will start doing it now. It will take me about a week for the new newsletter. So until then the same old stuff. Jake's Cystic Fibrosis Page How did you learn about my page? Friend Family Internet Search Link Other This The Cystic Fibrosis Ring site owned by Jake Shasserre Previous Next Random Site ... List Sites Want to join the ring? Click here for info Sign My Guestbook View My Guestbook Email: jake_the_snakers@hotmail.com

169. Finding May Shed New Light On Cystic Fibrosis CNN http://cnn.com/2001/HEALTH/conditions/03/01/cystic.fibrosis.ap/index.html

170. Angela's Story About Living With Cystic Fibrosis Personal site by a girl with CF. http://www.faculty.fairfield.edu/fleitas/angela.html

171. CNN - Potential New Approach To Cystic Fibrosis Treatment Reported - October 9, CNN http://www.cnn.com/HEALTH/9910/09/cystic.fibrosis/index.html

[an error occurred while processing this directive] MAIN PAGE WORLD U.S. LOCAL ... daily almanac MULTIMEDIA: video video archive audio multimedia showcase ... more services E-MAIL: Subscribe to one of our news e-mail lists. Enter your address: document.write(' '); Or: Get a free e-mail account E-MAIL DISCUSSION: message boards chat feedback CNN WEB SITES: AsiaNow Svenska Norge Danmark ... Italian FASTER ACCESS: europe japan TIME INC. SITES: Go To ... Time.com People Money Fortune EW CNN NETWORKS: more networks transcripts SITE INFO: help contents search ad info ... jobs WEB SERVICES: health > story page Potential new approach to cystic fibrosis treatment reported October 9, 1999 Web posted at: 10:46 p.m. EDT (0246 GMT) In this story: Signs of disease reversed Large doses of supplements not advised RELATED STORIES, SITES SEATTLE (CNN) Researchers have discovered that high doses of a specific fatty acid can reduce symptoms of cystic fibrosis in mice a finding that potentially could lead to a treatment for a disease that is now incurable in humans. People with cystic fibrosis exhibit high levels of arachidonic acid (AA) and low levels of docosahexaenoic acid (DHA). Researchers who bred mice with the genetic defect that causes cystic fibrosis found that the mice exhibited the same imbalance of fatty acids.

172. Cystic Fibrosis Personal page by an aunt for her neice with CF. http://members.tripod.com/~blackwolf54/index.html

var cm_role = "live" var cm_host = "tripod.lycos.com" var cm_taxid = "/memberembedded" Check out the NEW Hotbot Tell me when this page is updated Last updated 05/27/2004 This page is Dedicated to my niece Alisha Sorry, your browser doesn't support Java(tm). If you scroll down this page you will see that you can speak with whom ever is here live A few facts about CF CF is a genetic disease affecting approximately 30,000 children and young adults in the United States. CF causes the body to produce an abnormally thick, sticky mucus due to the faulty transport of sodium and chloride (salt) within cells lining organs such as the lungs and pancreas, to their outer surfaces. This abnormal mucus clogs the lungs and leads to life-threatening infections. The thick CF mucus also obstructs the pancreas, preventing enzymes from reaching the intestines to help break down and digest food. Please support the CF foundation Here are some links to look at and learn ..... Email webmaster@blackwolf-designs.com Sign My Guestbook

173. Redirect Web Page Mother of a girl with CF has published a book which describes the story of her daughter's life with cystic fibrosis. http://ourworld.compuserve.com/homepages/Pat_and_John_Cuckney/

Our website has moved: you should be automatically redirected in 3 seconds www.cuckney.net Please bookmark our new address to help you find us again

174. Gene Testing For Birth Defect Goes Mainstream CNN http://cnn.com/2001/HEALTH/conditions/10/02/cystic.fibrosis.ap/index.html

175. Federación Española Contra La Fibrosis Quística Translate this page Esta página usa marcos, pero su explorador no los admite. http://www.fibrosis.org/

Esta página usa marcos, pero su explorador no los admite.

176. Ultimatesearch.com ultimatesearch, Home. Mon, 24 May 2004 GMT. Top Searches. • Travel • Health • Cars • Mortgage • Computers • Gifts • Flowers http://www.afcee.asso.fr/

177. Index Of /HotSprings/Villa/4210 http://www.geocities.com/HotSprings/Villa/4210/

Index of /HotSprings/Villa/4210 Name Last modified Size Description ... Parent Directory 08-May-2004 04:21 - 27-Dec-2001 20:05 - 23-Feb-2000 21:43 - 23-Feb-2000 21:42 - 01-Aug-2001 22:50 - 22-Dec-2000 11:27 - 23-Feb-2000 21:42 - geobook_files001.tmp/ 23-Feb-2000 23:27 -

178. [webhost.senet.com.au] webhost.senet.com.au http://cysticfibrosis-sa.senet.com.au/

[webhost.senet.com.au]

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