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Nanograms Is Available ISSN 1941-2576 Fourth Quarter 2008 © 2008 Iron Disorders Institute (IDI) Education is our cure for Iron-Out-of-Balance™ www.irondisorders.org Our mission: Iron Disorders Institute (IDI) exists so that people with iron dis- orders receive early, accurate diagnosis, nanoIDI’s Newsletter dedicated to information aboutgrams disease prevention caused by Iron-Out-of-Balance™ appropriate treatment and are equipped to live in good health. Great news for patients! Ralph G. DePalma, MD, FACS, Western Regional Hemochromatosis Patient Conference, Director of Transplant Services, Depart- RENO, Nevada; April 4, 2009. Saint Mary’s Hospital. ment of Veterans Affairs, Professor of Hear leading experts talk about one of the nation’s larg- est screening studies Hemochromatosis—Iron Overload Surgery, Uniformed Services UHS, Study (HEIRS), excess iron in the lungs and joints. Learn Washington, DC about advances in therapeutic and imaging techniques Joanne M. Jordan, MD, MPH, and access to care. Attendees will have an opportunity to Associate Professor, Medicine and Or- meet the experts and have ample time to ask questions. thopaedics, University of North Carolina School of Medicine, Conference organizers Mardi Brick, Chris Kieffer, Rick RENO Kaufmann, and Gerry Koenig will host a pre-conference Chapel Hill, North Carolina reception “Meet & Greet” where light snacks and bever- APRIL 4, Gordon D. McLaren, MD, ages will be offered to registered guests. 2009 Professor, Department of Medicine, University of California, Irvine, CA; VA Register online JOIN Medical Hospital, Irvine, CA www.ironconference.com US! Lewis J. Wesselius, MD, or by contacting Iron Disorders Institute toll free: 888- Chief, 565-4766. Registration is $50.00 up to March 20 and Pulmonary and Critical Care Medicine, $75.00 after the 20th. For an accompanying family Mayo Clinic, Scottsdale, Arizona member such as spouse, brother, sister, daughter or son registration is $50.00 regardless. A limited number of Where: St. Mary’s Hospital – 235 West 6th Street, Reno scholarships are available. Hotel accomodations: Several hotels are within walking distance of St. Mary’s; these include: The Silver Legacy, DETAILS: www.ironconference.com Circus-Circus and others offering excellent rates for early reservations. In this issue “The future depends on what we do in the present.” —Mahatma Gandhi Update on Minority Health: Plans Iron-Out-of-Balance™ and Metabolic for 2009 to reach out and find Syndrome: find out why excess iron Also in this issue minorities at risk or suffering with should be the 6th risk factor for meta- #6 abnormal iron levels...page 4 About IDI bolic syndrome......page 6 Page 2 Message from Misunderstood-Misinformed: Miracle Babies: Women with hemochro- Executive Director Coping with stigmas and knowledge-gaps: matosis who overcame all the barriers, then Page 2 why so many hemochromatosis patients against all odds enjoyed successful preg- Honorariums and Memorials are wrongly accused of heavy drinking... nancies....page 5 Page 3 page 7 Page 9 Featured Blood Center Page 3 Infection: harmful invader’s need iron HELP us get the WORD out! Page 9 to survive and have adapted clever ways IRON SMART Charts and Tips to assure an ample supply of the metal... Page 11 page 8 IN THE NEXT ISSUE: “Cyberchondria”, Enjoy the holidays and special anniver- Talk on the “LIST” smoking, irregular heart Delayed Cord Clamping and Iron Deficiency saries with the “Triple-Chocolate Anemia; Misunderstood: When Family Mem- beat and heart failure bers Won’t Listen; Elevated Ferritin and Car- Bundt Cake” and a special chocolate diovascular Fitness among Young Men. cake recipe for hemochromatosis If we have your email address, we will send diabetics....page 10 you a reminder that nanograms is available. Printed copies will be mailed to IDI MEM- COOK! BERS. Join today and get your printed copy of nanograms. Page two: about IDI For Iron-Balance Page 10 page 9 Fourth Quarter 2008 www.irondisorders.org nanograms ng ©2008 Iron Disorders Institute Iron Disorders Institute Medical & Scientific Advisory Board Dear Reader, As we round out this final quarter, we reflect on our accomplishments for 2008. The amount of work we get done always amazes me, but does not surprise BONKOVSKY PHATAK AUST BEARD BARTZOKIS me, because of the many dedicated volunteers and staff IDI is blessed to have. In 2008, we published our newsletter nanograms highlighting our Midwestern Regional Hemochromatosis Patient Confer- ence in Columbus, Ohio and promoting our 2009 conference CAPLAN CONNOR JORDAN KOWDLEY LONGSHORE in Reno. Although IDI offers two websites and a toll free Infor- mation Line, patients rate conference experiences very high. Regional hemochromatosis conferences are intended to in- crease patient access to opportunities to meet face-to-face with leading experts and other patients. IDI will rotate loca- MacPHAIL MAINOUS MEANS MEYERS PRINCELL tions and aim for April or October for these events as long as funding is available. Other accomplishments in 2008 included wrapping up and submitting our Minority Health Statewide Plan to the Office of Minority Health & Human Services, Region IV. We wrote sec- SKIKNE WESSELIUS WEINBERG WURSTER ond editions of three books: The Hemochromatosis Cookbook, Herbert Bonkovsky, M.D., Chair, Medical & Scientific Advisory Board, Vice President Cannon Research Center, Carolinas Healthcare Systems; P.D. Phatak, M.D., Vice Chair, Medical & Scientific, Advisory Board Rochester Gen- Guide to Anemia and Guide to Hemochromatosis. We reached eral Hospital; Ann Aust, Ph.D., Utah State University, John Beard, Ph.D., Pennsylvania State University, George Bartzokis, M.D., University of California, Los Angeles, Arthur L. Caplan, Ph.D., University of Pennsylvania; James out to more than 20,000 healthcare providers with educational Connor, Ph.D., Penn State University, James Cook, M.D., Kansas University Medical Center (photo not available), literature; we responded to an average of 500 requests for in- Joanne Jordan, M.D., M.P.H., Thurston Arthritis Research Center, UNC Chapel Hill; Kris Kowdley, M.D., Vir- ginia Mason Medical Center; Seattle, WA; John Longshore, Ph.D., Carolina Medical Center, Charlotte, NC; Patrick formation each month. We also met with key policy makers in MacPhail M.D., University of the Witwatersrand, South Africa; Arch Mainous III, Ph.D., Medical University of Washington, DC; and will launch our CALL to ACTION early South Carolina; Robert Means, M.D., University of Kentucky; David Meyers, M.D., Kansas University College of Medicine; Mark Princell, M.D., Spartanburg Healthcare System; Barry Skikne, M.D., Kansas University Medical next year. Center; Eugene Weinberg, Ph.D., Indiana University; Lewis Wesselius, M.D., Mayo Clinic, Scottsdale, AZ; Mark Wurster, M.D., Ohio State University Chris Kieffer, one of the founding directors of IDI, joined our team to direct IDI’s Hemochromatosis Education-Outreach Board of Directors Program. Chris infused her high energy into the team, inspir- ing us to surpass expectations, reaching more than 150 po- tential education partner opportunities. Chris also oversees IDI volunteer national network. Dee Dawkins, Chair, IDI Minority Health Advisory Council has agreed to help IDI implement its ROBERSON WHITTENBURG MAIN GARRISON BONKOVSKY Iron Overload Awareness Program, which is due to kick-off late January 2009. Isabell Bedell, MPH has agreed to monitor the Iron Forum, a project that has been long in the making. The forum is a complement to IDI’s Excess Iron Discussion List. Where the List is tailored for patient- to-patient support, The forum will offer opportunities for patients and healthcare BORTLE GALLAGHER GORDON KOENIG PHATAK Chairman Board of Directors Tim Roberson, Greenville SC; Vice -Chairman George Whittenburg, providers to ask targeted questions answered by a healthcare Amarillo, TX; Secretary Laura Main, Newark, OH; Executive Director Cheryl Garrison, Clyde NC; professional. Questions and Answers will be archived; the Fo- Herbert Bonkovsky, M.D., Charlotte, NC; Chad Bortle, Newark, OH; Tom Gallagher, Albany, NY; Aran Gordon, London England; Gerry Koenig, Austin, TX; P.D. Phatak, M.D., Rochester NY. rum also offers a Search feature. nanograms (ISSN 1941-2576) Volume 2, Issue 4 is a quarterly newsletter, published We are confident and excited about 2009. As the historic presi- by Iron Disorders Institute for people with an interest in or at risk for disease caused dential election sets the bar for change in America, we must by Iron-Out-of-Balance™. stay alert for opportunities, make every effort to help where we Acknowledgments: can and make sure our perspectives are known. Our efforts to We especially thank contributors/reviewers, design artists and fact checkers: promote of iron related health issues, emerging technology, E.D. Weinberg, Ph.D. (Chair, Publications); Cheryl Garrison, (Editor); Herbert best practice guidelines, offer support, education and outreach Bonkovsky, M.D.; Mark Wurster, M.D.; Stephanie Clary; Timm Artus; Jim Hines; Peggy Clark; David Garrison; Gerry Koenig; Lee Woods; Chris Kieffer; Isabelle are high priorities for IDI. We will continue to highlight our mile- Bedell; Mardi Brick; Monica Brummer; Jennifer Hyland; Merdith Bogardus; Dee stones for you in future issues of nanograms. Dawkins; Meanwhile, keep reading, get involved and share the new year Contact us... with us to carry out our mission: …that every person with an iron disorder receive early, accurate diagnosis, appropriate Iron Disorders Institute Phone 1-888-565-IRON
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