Spring 2010 - National Marfan Foundation

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2 Connective Issues Dates & Deadlines June June 6 June 6 June 26 July July 8–11 July 23 July 25 July 30 July 31 July 31 August August 28 August 29 August 29 September TBD TBD Sept. 20 Sept. 26 Spring 2010 Mid-Atlantic Provisional Chapter Family Lunch and Smithsonian Museum Tour Contact: Amy Speck, siberianspring@hughes.net NMF Northern Illinois Chapter 17th Annual Walk-a-Thon Ty Warner Park, Westmont, IL Contact: Bruce Klein, 630-415-0044 or bklein01@sbcglobal.net Silicon Valley, CA, Local Network Group Meeting Contact: Maya Zimmerman, maya.m.zimmerman@gmail.com NMF 26th Annual Conference, Houston, TX Register at www.marfan.org Contact: Maggie Hogan, 800-8-MARFAN, ext. 38 or mhogan@marfan.org 12th Annual JAFGO Golf Outing, Mill Pond Golf & Catering, Medford, NY Contact: Glenn Stidham, 631-676-6706 Massachusetts Chapter “Heart to Heart” Support Meeting 11:00 am at Children’s Hospital Boston at Waltham Contact: Jon Rodis, 617-846-4975 or jrmarfan58@aol.com Heart of Iowa Chapter Moonlight Stroll, 8:30–10:00 pm, Pleasant Hill, IA Contact: Teri Dean, 515-371-5633 or tkdean11@mchsi.com Heart of Iowa Chapter 10th Anniversary Have Heart for Marfan Walk and Fun Run. Registration begins at 7:00 am, Pleasant Hill, IA Contact: Teri Dean, 515-371-5633 or tkdean11@mchsi.com PennJersey Chapter NMF Night at the Riversharks baseball game Contact: Annette & Dan Makanoff, 856-751-1796 or dmakanoff@comcast.net Chapter Quarterly Financial Form and Year-End Summary Due Silicon Valley, CA, Local Network Group Meeting Contact: Maya Zimmerman, maya.m.zimmerman@gmail.com Mid-Atlantic Chapter Summer Barbecue and Meeting, Centreville, VA, 1:00–4:30 pm Contact: Kelly Berklite, kberklite@verizon.net PennJersey Chapter 5th Annual Family Picnic 11:00 am–4:00 pm, Laurel Acres Park, Mt. Laurel, NJ Contact: Annette & Dan Makanoff, 856-751-1796 or dmakanoff@comcast.net 10th Annual Northern CA Chapter Family BBQ/Fundraiser/Steering Committee Meeting Contact: Susan Meier, 916-632-3214 or susan.meier@starstream.net Sacramento, CA, Area Local Network Family Potluck and Game Night Contact: Susan Meier, 916-632-3214 or susan.meier@starstream.net St. Louis Chapter Meeting, Barnes-Jewish Hospital, 7:00–9:00 pm Contact: David Striker, 314-542-2413 or dasmd913@aol.com Massachusetts Chapter Annual Get Together, Winthrop, 1:00–5:00 pm Contact: Jon Rodis, 617-846-4975 or jrmarfan58@aol.com For more details about upcoming events and meetings, be sure to check the NMF Calendar on our website, www.marfan.org. 22 Manhasset Avenue Port Washington, NY 11050 516-883-8712 | 800-8-MARFAN www.marfan.org Boards & Staff Board of Directors Jon Tullis, Chair, PA Gavin Lindberg, Vice Chair, MD Karen Murray, Secretary, NY Raymond Chevallier, Treasurer, NY Susan Falco, Executive Committee Member-at-Large, NY Gary Kauffman, Executive Committee Member-at-Large, FL Mary J. Roman, M.D., Executive Committee Member-at-Large, NY Scott Avitabile, Member-at-Large, NJ Steven Crombe, Member-at-Large, FL Teri Dean, Member-at-Large, IA Barbara Heller, Member-at-Large, MD Jerry Lerman, Member-at-Large, NY Jim Sidorchuk, Member-at-Large, NY Diane M. Sixsmith, MD, Member-at-Large, NY Benjamin Weisman, Member-at-Large, MA Priscilla Ciccariello, Chair Emeritus, NY Michael Weamer, Board Advisor, NY Professional Advisory Board Dianna Milewicz, MD, PhD, Chair, University of Texas Houston Health Science Center, TX Alan C. Braverman, MD, Washington University School of Medicine, MO Peter H. Byers, MD, University of Washington School of Medicine, WA Duke Cameron, MD, Johns Hopkins Hospital, MD Heidi Connolly, MD, Mayo Clinic, MN Joseph S. Coselli, MD, Baylor College of Medicine and St. Luke’s Episcopal Hospital, TX Jessica G. Davis, MD, New York Presbyterian Hospital-Weill Cornell Medical Center, NY Richard B. Devereux, MD, New York Presbyterian Hospital-Weill Cornell Medical Center, NY Hal Dietz, MD, Johns Hopkins Hospital, MD Sylvia A. Frazier-Bowers, DDS, PhD, University of North Carolina at Chapel Hill, NC Ronald V. Lacro, MD, Children’s Hospital Boston. MA Irene Maumenee, MD, University of Illinois Eye and Ear Infirmary, IL D. Craig Miller, MD, Stanford University School of Medicine, CA Reed E. Pyeritz, MD, PhD, University of Pennsylvania School of Medicine, PA Francesco Ramirez, PhD, Mount Sinai School of Medicine, NY David L. Rimoin, MD, PhD, Cedars-Sinai Medical Center, CA Lynn Y. Sakai, PhD, Oregon Health Sciences University, OR Paul D. Sponseller, MD, Johns Hopkins Hospital, MD Vincent L. Gott, MD, Johns Hopkins Hospital, MD, Member Emeritus Victor A. McKusick, MD (1921–2008) Scientific Advisory Board Bjorn Olsen, MD, PhD, Chair, Harvard Medical School, MA Craig T. Basson, MD, PhD, New York Presbyterian Hospital-Weill Cornell Medical Center, NY John C. Carey, MD, University of Utah Health Sciences Center, UT Bruce D. Gelb, M.D., Mount Sinai School of Medicine, NY Christine Seidman, MD, Harvard Medical School, MA Robert W. Thompson, MD, Washington University School of Medicine, MO Richard J. Wenstrup, MD, Myriad Genetic Laboratories, Inc., UT Victor A. McKusick, MD (1921–2008) Staff Carolyn Levering, President & CEO Judy Gibaldi, Senior Vice President, Operations & Finance Josephine Grima, PhD, Vice President of Research & Government Relations Jennifer Buffone, LCSW, Director of Support Services & Volunteer Development Jennifer Grignoli, Director of Development Maggie Hogan, Director of Foundation Relations & Conference Planning Jonathan Martin, Director of Education & Awareness Programs Eileen Masciale, Director of Communications, Newsletter Editor Brian Polk, Director of Information Technology Cathie Tsuchiya, Administrative Director & Local Fundraising Coordinator Kathy Jeffers, Manager of Volunteer Development Amy Kaplan, RN, Manager, Information Resource Center Alexandra Dubow, Design & Production
There is still time to enroll in the Atenolol vs. Losartan in Individuals with Marfan Syndrome clinical trial—the deadline for the trial to enroll 604 participants is January 31, 2011. You must be between six months and 25 years of age and meet additional criteria (see box below for details). There were 535 people enrolled in the trial as of April 26, 2010; only 69 more are needed. The clinical trial is funded by the National Heart, Lung, and Blood Institute and conducted by the Pediatric Heart Network and leading Marfan syndrome clinics around the country. It is comparing the effect of losartan, an FDA-approved medication, and atenolol, a beta blocker that is the current Connective Issues Message from Carolyn Levering, NMF President & CEO The NMF was gratified by the publication of the new guidelines on aortic disease diagnosis and treatment earlier this year. With the American College of Cardiology (ACC) and American Heart Association (AHA) leading the effort, along with several other important medical associations, the guidelines are a critical step in the right direction for people with aortic disease, including our Marfan syndrome and related disorders community. It wasn’t too long ago—1995—that the NMF was a lone voice advocating for awareness of aortic disease in order to prevent emergency department tragedies. At that time, there were an increasing number of people calling our hotline who had lost a loved one who had been misdiagnosed in the emergency department. We saw this sad trend and knew we had to be proactive in raising awareness to help the Marfan community. As a result, we developed our Emergency Medicine Campaign. Continues on page 21 Less Than 70 Additional Patients Needed: Enroll in Clinical Trial Today If you or your child have recently been diagnosed or if you have been thinking about enrolling in the trial, now is the time to take action. For more information about the clinical trial, go to the NMF website, www.marfan.org. Who Can Be in The Trial? To be in the clinical trial you must: • Be between the ages of six months and 25 years at the time you begin the trial. • Have a diagnosis of Marfan syndrome. • Not be pregnant. • Not have had any aortic surgery. • Not have serious side effects from either atenolol or losartan. • Not need to take atenolol or another beta blocker to treat a medical problem other than your dilated aorta. • Be willing and able to travel 5 times over 3 years to the study site for all study echocardiograms and examinations. gold standard, on the aorta (the large vessel that carries blood away from the heart) in people with Marfan syndrome. The length of the study is three years from the time of enrollment. Scholarships are still available from the NMF to help people travel to a study site and help cover other costs that are not covered by their health insurance. Marfan Research: A Family Affair Jennifer Phillips, of South Grafton, MA, h a s t w o s o n s , Gregor y, 13, and Douglas, 11, who have already completed the three-year study, visiting the site at Children’s Hospital Boston. She is thrilled that they were able to participate and contribute to Marfan syndrome research. “Even though it was three years, participating in the trial did not require any extra effort on our part,” said Jennifer. “The boys were already seeing the cardiologist regularly, taking medication and getting echocardiograms. There was only one extra appointment. It was an easy decision for us to get involved.” Jennifer and her husband, Justin, who also has Marfan syndrome, were fully confident in the trial. As Jennifer noted, “The two study drugs are already approved and on the market and we knew their record of safety. It’s really a matter of finding out how they affect the Marfan aorta and we wanted to do our part.” Douglas and Gregory were happy to be involved in the study. In fact, they are the ones who urged their father to enroll in the NMF-supported adult study on losartan that was conducted at Brigham & Women’s Hospital. Volume 29, No. 2 3
Page 1: National Marfan Foundation: Educati
Page 5 and 6: NMF to Honor Denton A. Cooley, MD,
Page 7 and 8: Connective Issues 2010 Membership C
Page 9 and 10: Kudos to the volunteers who got inv
Page 11 and 12: Ritter Rules Ritter Rules are life-
Page 13 and 14: NMF member Jonathan Lerman with dau
Page 15 and 16: Events Events NMF and TCI: A Lifesa
Page 17 and 18: News: Each One Reach One participat
Page 19 and 20: Volunteer Profile: Sherry Heldt She
Page 21 and 22: 26th Annual Conference Continued fr
Page 23 and 24: We Remember and Honor . . . Connect

Spring 2010 - National Marfan Foundation

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