61. CHIN: Defects And Syndromes Treatment Heart Center Encyclopedia. barth syndrome. Information andSupport. barth syndrome Foundation. Cardiomyopathy. Information. http://www.tchin.org/families/chd.htm

Inclusion on the following lists does not necessarily imply endorsement, nor do we guarantee the accuracy of the information contained on these sites. Always consult your physician(s) with your questions and concerns. Adults with CHD Informational Resources Defect/syndrome Specific sites Organizations ... Humanitarian Organizations Return to the Internet links Home Page Defect/Syndrome Specific Sites The following is a collection of carefully selected links for many specific congenital heart defects and conditions. Before you begin your search for information, please understand that the resources you find may not accurately reflect your child's specific situation, especially when you or your child have more than one defect or condition. Many people find it helpful to have their physician give them a diagram of their (child's) heart. A detailed diagram, along with a good explanation by a member of your medical team, may be the best way for you to understand how your (child's) heart works, and what may need to be done to help the heart work better. Arrhythmias Information Indications for Anticoagulation in Atrial Fibrillation Atrial Fibrillation Diagnosing Arrhythmia Explaining Arrhythmia ... Patient Education - NASPE (Information about specific types of arrhythmia) Directory of Pediatric Electrophysiologists Organizations

62. K-State Research - Funding Bulletins 2002 1914 barth syndrome Research (BSF). The barth syndrome Foundation is seekingproposals for research that may shed light on any aspect of the syndrome. http://www.ksu.edu/research/funding/bulletins/bul02/bullet19.htm

Funding Bulletin May 24, 2002 (Vol. 11, No. 19) GENERAL 19-1 Tibet Development, Professional and Cultural Exchange (State) The State Department's Bureau of Educational and Cultural Affairs is inviting applications for professional development, education and cultural exchange projects that promote understanding between the people of the U.S. and the Tibetan ethnic group living in China. Project areas include: public health management; sustainable development and eco-tourism, vocational education; developing entrepreneurship/ and cultural preservation. ECA/PE/C/WHAEAP-02-66 (FR 05/07/02) URL: http://exchanges.state.gov/education/rfgps Deadline: 6/14/2002 19-2 Advanced Technology Program (ATP) (NIST) The Commerce Department's National Institute of Standards and Technology is inviting proposals under the Advanced Technology Program, which provides cost-shared awards to industry to accelerate the development and dissemination of challenging, high-risk technologies that promise significant commercial payoffs. Awards are made to small, medium or large for-profit companies and for joint ventures. Universities may participate as subcontractors for companies or as partners in a joint venture. Technology areas include biotechnology, including animal and plant biotechnology; electronics, computer hardware and communications; information technology; manufacturing and advanced materials. URL: http://www.atp.nist.gov/

63. Listings Of The World Health Conditions And Diseases Rare barth syndrome is a rare but serious genetic disorder that affects males.Search, Complete Directory. Alstrom Syndrome http://listingsworld.com/Health/Conditions_and_Diseases/Rare_Disorders/Barth_Syn

64. Pfam 8.0 : Acyltransferase involved in phospholipid biosynthesis and other proteins of unknown function 1.This family also includes tafazzin Q16635, the barth syndrome gene 2. http://pfam.wustl.edu/cgi-bin/getdesc?name=Acyltransferase

65. RSSP: News Awards will be announced in April 2003. barth syndrome Foundation RFP.barth syndrome is an Xlinked recessive, cardioskeletal myopathy http://www.uark.edu/admin/rsspinfo/news/rdtips/20020610tips.html

Site Map: Home News Navigation General News Funding Opportunities Proposal Preparation Post Award ... Reporter Articles Online Tips June 10, 2002 New Program Announcements For more information about any of these programs, call Phillip Stafford at 575-8411 or e-mail psstaff@uark.edu National Science Foundation, E-Bulletin The E-Bulletin announces key dates on which grant proposals are due at NSF for the current 4 months. These dates are subject to change; dates changed since original announcement appear in red. In most cases, the time between announcement and deadline is at least three months. Key dates for other periods of time (for example, for an entire calendar or fiscal year) can be viewed from the NSF Online Documents - Deadlines page. Department of Education The Education Department has issued its annual forecast of grant activity for the coming year. ED has decided not to publish the forecast of direct grant competitions in the

66. Medicalseek - Search Engine For The Healthcare Industry Conditions and DiseasesRare Disordersbarth syndrome barth syndrome Family NetworkOffers details about the disease, message board, research sites, events and http://www.medicalseek.net/Conditions_and_Diseases_Rare_Disorders_Barth_Syndrome

CATEGORIES ADD A LINK ADVERTISE CONTACT US ... Rare Disorders Barth Syndrome Conditions and Diseases:Rare Disorders:Barth Syndrome Barth Syndrome Family Network Offers details about the disease, message board, research sites, events and private chats. Numerous links to other resources. shelbowen.freeyellow.com/ Barth Syndrome Foundation Promotes knowledge about this disease among families, physicians and scientists, serving as a focal point for data and research for scientists. The group offers support to families learning to cope with the disorder. barthsyndrome.org Clinical Mass Spectrometry Laboratory An article about Barth Syndrome with a description, clinical manifestations, etiology, epidemiology, diagnosis, prognosis and management. med.jhu.edu/CMSL/Barth_Summary.html CATEGORIES ADD A LINK ADVERTISE CONTACT US ... FORUMS

67. Funding Alert -- May 22, 2002 WEB http//grants2.nih.gov/grants/guide/noticefiles/NOT-AI-02-023.html.Ref. NOT-AI-02-023. NIH Guide, May 17, 2002. barth syndrome. http://www.ors.duke.edu/fundalrt/02/02may22.htm

May 22, 2002 Volume 8, Number 17 Download this week's issue: MS Word 6 version (.doc) Adobe Acrobat version (.pdf) (get Adobe Acrobat Reader Funding Alert Archives FELLOWSHIPS FUNDING OPPORTUNITIES ANTI-TERRORISM RESEARCH MULTIDISCIPLINARY SOCIAL SCIENCES HEALTH SCIENCES ... COMMUNITY DEVELOPMENT FELLOWSHIPS (these listings were recently added or updated on the ORS webpages) On the Faculty Support page: American Institute of Indian Studies Senior Research Fellowships International Union Against Cancer International Cancer Fellowships National Endowment for Democracy Visiting Fellows Program On the Junior Faculty Funding page: American Heart Association Scientist Development Grants Grant (William T.) Foundation W. T. Grant Scholars Program National Alliance for Research on Schizophrenia and Depression Young Investigator Awards National Institute of Mental Health Academic Career Award National Institute of Neurological Disorders and Stroke Career Development Award for Minority Scholars in Neuroscience National Science Foundation Faculty Early Career Development Program On the Postdoctoral Funding page: American Society for Engineering Education Office of Naval Research Postdoctoral Research Program National Alliance for Research on Schizophrenia and Depression Young Investigator Awards National Institute of Neurological Disorders and Stroke Career Development Award for Minority Scholars in Neuroscience Radiological Society of North America International Fellowship Women's Studio Workshop Hands-on-Art Visiting Artist Project Grant On the

68. Pediatric Cardiology 18:143-145 (1997) 1997. Heart Transplantation for barth syndrome. We report a patient withbarth syndrome who underwent successful heart transplantation. http://link.springer-ny.com/link/service/journals/00246/bibs/18n2p143.html

Pediatr Cardiol 18:143-145 (1997) Heart Transplantation for Barth Syndrome S.S. Adwani, B.F. Whitehead, P.G. Rees, A. Morris, D.M. Turnball, M.J. Elliott, M.R. de Leval Subscribers may view full text in PDF HTML (see notes on formats here Abstract Barth syndrome is an X-linked recessive disorder comprising dilated cardiomyopathy, muscular hypotonia, and cyclical neutropenia. Affected children usually die during infancy as a consequence of septicemia, cardiac failure, or both. We report a patient with Barth syndrome who underwent successful heart transplantation. link@springer-ny.com

69. Descriptions Of Mitochondrial Diseases barth syndrome/ LIC (Lethal Infantile Cardiomyopathy). Symptoms skeletal myopathy,cardiomyopathy, short stature, and neutropenia. Cause Xlinked recessive. http://www.umdf.org/mitodisease/descriptions.html

Alpers Disease Barth syndrome Beta-oxidation Defects Carnitine-Acyl-Carnitine Deficiency ... VLCAD Symptoms listed here are those commonly found in each disease. Sources, where not specified, include publications by Drs. Salvatore DiMauro (Metabolic Myopathies; Handbook of Clinical Neurology ; 1992; 18(62); 479-522) and Richard Haas (Disorders of Oxidative Metabolism and Mitochdondria; Neurology in Clinical Practice , Bradley, et al, Chapt 69; 1996; 1523-32). Suggestions and questions are welcome, contact webmaster@umdf.org Alpers Disease Long name: Progressive Infantile Poliodystrophy. Symptoms: seizures, dementia, spasticity, blindness, liver dysfunction, and cerebral degeneration. Links Source: Dr. Rolf Luft; The development of mitochondrial medicine. [Review] ; Proceedings of the National Academy of Sciences of the United States of America Barth syndrome LIC (Lethal Infantile Cardiomyopathy) Symptoms: skeletal myopathy, cardiomyopathy, short stature, and neutropenia.

70. UMDF Resource Map Europe barth syndrome Group; England Children's Mitochondrial DiseaseNetwork (main page not viewable in older versions of Netscape); http://www.umdf.org/resources/index.asp

Resources by Area Resources Click below to find resources for a specific area Click below to search all resources On-Line Support UMDF Chapters Support Groups General Medical ... Submit a Resource General Medical Action Bioscience American Academy for Cerebral Palsy and Developmental Medicine American Medical Association Child-Neuro : Pediatric neurology resources on the internet, including a news group, lots of good links. RxList - The Internet Drug Index Mitochondrial Related Organizations Athena Diagnostics - List of their testing services and an excellent source of information on mitochondrial diseases. CDGS Family Network : Informative page about Carbohydrate-Deficient Glycoprotein Syndrome. Center for Inherited Disorders of Energy Metabolism (CIDEM) : Case Western Reserve University. CERI : Mitochondrial Nutrition, Aging and Cognition -very informative overview of mitochondrial function Directory of National Genetic Voluntary Organizations : A large list of genetic support groups, some mitochondrial.

71. Untitled Annette Galley 04/06/00 082908 My Emailgalley@mpx.com.au How did you find usthrough barth syndrome Home Page Childs heart defect barth syndrome Did you http://www.geocities.com/HotSprings/Spa/5652/geobook.html

Welcome to Heart to Heart's Guestbook Thank you for taking the time to view our guest book Karen Carnes My Email: sultanscott@one.net.au How did you find us: booklet Childs heart defect: transposition of the great arteries Did you find our website helpful: yes Comments: I FOUND THIS WEBSITE VERY INTERESTING AND HELPFUL AND I WILL VISIT THIS SITE MORE OFTEN. Comments: My Email: mrfenech@optusnet.com.au How did you find us: TPCH Childs heart defect: Aortic valve stenosis/regurgitation Did you find our website helpful: yes Comments: Joanne Horne My Email: horne@hypermax.net.au How did you find us: search Childs heart defect: ASD repaired Did you find our website helpful: yes Comments: My daughter had surgery in May at TPCH and is doing GREAT. It's good to have an aussie site on the net. Keep up the good work. Bev My URL: http://www.mitmania.net.au/~mcc/holt/index1.html My Email: bess@mitmania.net.au Did you find our website helpful: yes Comments: Great page! Stephen Kent My URL: http://www.HeartKids.net My Email: Web.Manager@HeartKids.net How did you find us: HeartKids ACT Inc Childs heart defect: Ebstein's Anomoly (severe) Did you find our website helpful: Yes - It's great!

72. Josiah's BabyBook Volume 5 224846 My Emailharbrige@mpx.com.au, Comments i am sorry but i have lost youremail address.I have received your letter back to me regarding barth syndrome. http://www.geocities.com/Heartland/Prairie/7193/geo5.html

Josiah's BabyBook Volume 5 6-15-98 through 7-4-98 Deidre Cannon My Email: deidrep1@aol.com Comments: Your sweet little Josiah reminds me so much of my baby boy Caden who died when he was six and a half months old on January 2, 1997. My Caden was misdiagnosed and could have been saved with the proper treatment. That has been really hard to live with. Being a Christian is the only thing that has helped me deal with it. Your Josiah looks as though he had chubby little cheeks like my Caden. I sure do miss those chubby cheeks and that beautiful smile. I know that I'll see them again when I also get to see my Lord and Savior. Thank you for your web site and God bless you!! Kim Neblett My Email: kneblett@oz-online.net Comments: What a special page you have set up for your son. I have also lost a son he was still born. What a bunch of little angels we have running around in heaven.God bless. Josiah Royse My URL: http://sac.uky.edu/~jdroys0 Comments: we need more josiah's! Lissette My URL: http://members.xoom.com/Crick/jolivet.htm My Email: Lizzie9995@aol.com

73. Funding Highlights Vol HEALTH and LIFE SCIENCES barth syndrome Research Grants. In 2002,the barth syndrome Foundation, Inc. (BSF) will award its first http://www.uvm.edu/~reshmpg/06-07-02.htm

Funding Highlights Vol. 8, No. 20 June 7, 2002 MULTIDISCIPLINARY ENGINEERING, MATHEMATICS and PHYSICAL SCIENCES SOCIAL SCIENCES ... ENERGY/ENVIRONMENT MULTIDISCIPLINARY Education, Children’s Advocacy, Medical Research and the Arts (Charles Lafitte Foundation) http://www.charleslafitte.org Contact: Jennifer Vertetis, Telephone: (212) 655-3063; E-mail: jennifer@charleslafitte.org Deadline: None RGK Foundation The RGK Foundation awards program support grants in three areas: education, community and medicine/health. In the area of education, grants support programs that focus on formal K-12 education, integrating technology into curriculum; teacher development; and higher education. Community grants support human services programs, community improvement projects that enhance nonprofit management and promote philanthropy and voluntarism; and cultural arts programs, including educational and outreach activities. Grants in the area of medicine/health focus on efforts to promote the health and well being of children and families. Limited support is available for medical research programs. Internet: http://www.rgkfoundation.org

74. UD Biological Sciences/Nemours Program - V. Funanage Profile Iris Gonzalez, Ph.D. Senior Research Scientist (Ph.D., University of Delaware)Studying the genetics of barth syndrome and spinal muscular atrophy. http://www.udel.edu/bio/educational/grad/gradtracks/aidupont/vfunanage.html

Vicky L. Funanage, Ph.D. Director, Biomedical Research of the Nemours Foundation Head, Muskuloskeletal Inherited Diseases Laboratory Funanage Shortcut To: Contact Education Research Interests Current Projects ... Selected Publications Contact Top A.I. duPont Hospital for Children Nemours Biomedical Research 1600 Rockland Road Wilmington, DE 19803 Phone: (302) 651-6819 Fax: (302) 651-6876 E-mail address: vfunanag@nemours.org Education Top B.S., Pennsylvania State University M.S., Pennsylvania State University Ph.D., University of Delaware Postdoctoral, Alfred I. duPont Hospital Research Interests Top One area of interest concerns children afflicted with neuromuscular disease. Ongoing research conducted in Dr. Funanage's laboratory (Musculoskeletal Inherited Disease Laboratory [MID]) involves several projects designed to provide benefit to these children. The first involves the use of the compound hemin as a possible treatment for muscular dystrophy. Past research has shown that hemin increases the expression of muscle-specific genes and decreases the fibrosis associated with muscular dystrophy. In work conducted in the dystrophic dog model, intravenous administration of hemin showed positive trends in improving muscle strength; however, further work showed that very little of the administered hemin was reaching skeletal muscle. Together with Dr. Tatiana Samoylova of Auburn University, the MID laboratory is working on a novel method that is expected to increase the delivery of hemin to muscle tissue.

75. BLESSAHEART Product 2 Works Down Syndrome Down Syndrome Health Issues Down Syndrome WWW Page Health CareGuidelines For Individuals With Down Syndrome barth syndrome barth syndrome http://www.blessaheart.com/intlsite.htm

View International Organisations, Societies and Foundations Page Congenital Heart Surgery Atrial Septal Defect Atrial Septal Defect: Surgical and Trans-catheter Management Cachnet Consensus Conference Diagram Diagram: Atrial Septal Defect (Secundum Atrio-ventricular Canal Defect Diagram Atrio-ventricular Septal Defect Royal Children's Hospital Coarctation of the Aorta Cachnet Consensus Conference Diagram Heart Surgery Online Vanderbilt Pediatric Interactive Digital Library Congenitally Corrected Transposition of the Great Arteries Cachnet Mayo Clinic D0uble Outlet Right Ventricle (DORV) Heart Surgery Online Hypoplastic Left Heart Syndrome Children's Health Care System Diagram Literature Search: Heart Surgery Forum Online Support Group Double Aortic Arch Vanderbilt Pediatric Interactive Digital Library Ebstein's Anomaly Cachnet Mayo-Clinic Eisenmenger's Syndrome Cachnet Consensus Conference Mayo Clinic Patent Ductus Arteriosus Patent Ductus Arteriosus: A Parent's Guide Cachnet Consensus Conference Diagram Patent Ductus Arteriosus: A Parent's Guide Pulmonary Hypertension PHCentral Primary PAH) Pulmonary Hypertension Pulmonary Hypertension Association Tetralogy of Fallot Cachnet Consensus Conference Literature Search: Heart Surgery Forum Diagram Diagram: TOF Repaired ... Multimedia Module Total Anomalous Pulmonary Venous Return (TAPVR) Diagram Transposition of the Great Arteries Complete Transposition of the Great Arteries Heart Surgery Online Tricuspid Atresia

76. Non-Federal Funding: Funding Interest Autism, National Alliance for Autism Research, RG, PD, D, Jan, Feb, 888 7776227.barth syndrome (Cardioskeletal Myopathy), barth syndrome Fdn, RG, June, 914 834-1771. http://www.aecom.yu.edu/ogs/FundingSources/slfi.htm

Non-Federal Funding (by Funding Interest) For more information, click on source name to go to their web site. x = current AECOM grant Note: The funding interest " biomedicine " denotes funding in a variety of disciplines. RG = research grant JF = junior faculty (requires faculty appointment) PG = program grant (non-research) PD = post-doctoral award (PhD or MD) D = dissertation grant (pre-PhD) Tv = travel grant Tn = training grant * = U.S. citizenship/permanent residency required # = AECOM nomination required If searching for a specific foundation, you may wish to do a page search (find-Ctrl F) Funding Interest Source Award Type Deadline(s) Phone Addiction American Fdn for Addiction Research RG Addiction Peter McManus Charitable Trust RG Aug Aging Amer Fed for Aging Res X RG,JF,PD,D several Aging Ellison Medical Fdn X RG,JF Feb Aging Fox (Fan) and Samuels (Leslie R.) Fdn. RG Aging Reynolds (Donald W.) Fdn Tn Oct AIDS AMFAR (Amer Fdn for AIDS Res) X RG, PD

77. Below Are The Program Materials Received May 20 June 3. barth syndrome Foundation. Funding for research on the natural history,biochemical basis, and treatment of barth syndrome. June 30. http://grants-svr.admin.iastate.edu/OSP/Mail Log 149.htm

78. Barth Syndrome Website Results :: Linkspider UK barth syndrome Websites from the Linkspider UK. barth syndrome Directory.Complete Results for barth syndrome Related Topics. Barth http://www.linkspider.co.uk/Health/ConditionsandDiseases/RareDisorders/BarthSynd

Barth Syndrome Websites from Linkspider UK Keyword: Barth Syndrome Linkspider UK Directory Barth Syndrome Search for Directory Tree: Top Health Conditions and Diseases Rare Disorders : Barth Syndrome (3) Add URL Advertise Here! Personalize Amazon ... Weather See Also: Health: Conditions and Diseases: Cardiovascular Disorders: Heart Disease: Cardiomyopathy Health: Conditions and Diseases: Genetic Disorders Barth Syndrome Family Network - Offers details about the disease, message board, research sites, events and private chats. Numerous links to other resources. Barth Syndrome Foundation - Promotes knowledge about this disease among families, physicians and scientists, serving as a focal point for data and research for scientists. The group offers support to families learning to cope with the disorder. Clinical Mass Spectrometry Laboratory - An article about Barth Syndrome with a description, clinical manifestations, etiology, epidemiology, diagnosis, prognosis and management.

79. EMedicine - Limb-Girdle Muscular Dystrophy : Article By Glenn Lopate, MD Synonyms and related keywords barth syndrome, Bethlemmyopathy, Mcleod syndrome, sarcoglycanopathies, LGMD. http://www.emedicine.com/neuro/topic189.htm

document.write(''); (advertisement) Home Specialties CME PDA ... Patient Education Articles Images CME Patient Education Advanced Search Link to this site Back to: eMedicine Specialties Neurology Neuromuscular Diseases Limb-Girdle Muscular Dystrophy Last Updated: November 9, 2001 Rate this Article Email to a Colleague Synonyms and related keywords: Barth syndrome, Bethlem myopathy, Mcleod syndrome, sarcoglycanopathies, LGMD AUTHOR INFORMATION Section 1 of 10 Author Information Introduction Clinical Differentials ... Bibliography Author: Glenn Lopate, MD , Assistant Professor of Neurology, Department of Neurology, Division of Neuromuscular Diseases, Washington University School of Medicine; Chief of Neurology, St Louis ConnectCare Glenn Lopate, MD, is a member of the following medical societies: American Academy of Neurology, American Association of Electrodiagnostic Medicine American Neurological Association Muscular Dystrophy Association , and Phi Beta Kappa Editor(s): Raj D Sheth, MD , Director of Epilepsy Program, Chief, Associate Professor, Departments of Neurology and Pediatrics, Section of Pediatric Neurology, University of Wisconsin at Madison;

80. NFI - Rapport For Prosjekter Identification of new mutations in the gene responsible for barth syndrome, in Xq28.In American Journal of Human Genetics. Vol. 59, (1996) pp. A1469A1469. http://www.nsd.uib.no/nfi/rapport/?Keys=9477&language=no

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