Fall 2010 - National Marfan Foundation

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2 Connective Issues Dates &Deadlines September Sept. 20 Sept. 26 October October October 2 October 3 October 16 October 17 October 23 October 23 October 24 October 24 October 29 November November 1 November 7 November 15 November 18 Fall 2010 St. LouisChapter Meeting, Barnes-Jewish Hospital,7:00–9:00pm 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 NMF Research FundDrive Begins Chapter Quarterly Financial Form Due Workplace Campaigns Kickoff: ♥ Combined Federal Campaign (CFC) ♥ Health First-America’s Charities ♥ United Way 10th Annual Northern CAChapterFamilyBBQ/Fundraiser, Castro Valley, 1:00–5:00 pm Contact: Susan Meier, 916-632-3214 or susan.meier@starstream.net Southeast Florida NetworkGroup Meeting, Memorial Regional Hospital South, 2:00 pm Contact: MJ Freeman: 954-561-5096 or freemanmj@bellsouth.net Northeast Indiana Network Group Meeting at Parkview Women’s Health Center in Fort Wayne; 1:00 pm Contact Ellen England, 260-925-4041 or eeengland@gmail.com Los Angeles/Orange CountyNMF Network’s AnnualLuncheon at UCLA’s FacultyCenter Contact: Roelina Berst, (310) 476-6190 or Roelinab@roadrunner.com or Regine Wood Bluestein, (310) 779-8206 or Reginew33@aol.com 2Stridesfor Sarah—5Krun/1 mile walk, McAllister Park, San Antonio, TX Contact: Rachel Epperson, 210-402-3563 or scooscoodog@yahoo.com PennJersey Chapter’sMonte CarloMadness,7:00–11:00 pm at Aloft Hotel,Mt. Laurel, NJ Contact: Annette & Dan Makanoff, 856-751-1796 or dmakanoff@comcast.net Massachusetts Chapter “Heart toHeart”Support Meeting, 12:00 noon in Framingham Contact: Jon Rodis, 617-846-4975 or jrmarfan58@aol.com Houston Network Group Potluck Picnic in the Park, Tom Bass III Park— Pavilion #4; 12:00 noon–4:00 pm. Contact: Leah Goodman, 337-517-8636 or houstonmarfangroup@hotmail.com Omaha Network Group Halloween Pizza Party Contact: Sherry Heldt, 402-932-4505 or roshawco@hotmail.com Deadline forWinter ‘11Connective Issues submissions Southeast FloridaNetwork Group Meeting, MemorialRegional Hospital South, 2:00 pm Contact: MJ Freeman, 954-561-5096 or freemanmj@bellsouth.net St. Louis ChapterMeeting,Barnes-Jewish Hospital;7:00–9:00pm Contact: David Striker, 314-542-2413 or dasmd913@aol.com Heartworks Atlanta Contact: Kristin Braun, 516-883-8712 ext. 24 or kbraun@marfan.org For moredetailsabout upcoming events and meetings, besuretocheckthe NMF Calendar on our website, www.marfan.org. 22 Manhasset Avenue Port Washington, NY 11050 516-883-8712 |800-8-MARFAN www.marfan.org More online at www.marfan.org Boards &Staff Board ofDirectors Jon Tullis, Chair, PA Gavin Lindberg, ViceChair, MD Raymond Chevallier, Treasurer,NY Mary J. Roman, MD, Secretary, NY Susan Falco, ExecutiveCommittee Member-at-Large, NY Gary Kauffman, Executive CommitteeMember-at-Large, FL Karen Murray, Executive CommitteeMember-at-Large, NY Scott Avitabile, Member-at-Large,NJ Maya Brown-Zimmerman, Member-at-Large,CA Steven Crombe, Member-at-Large,FL Teri Dean, Member-at-Large,IA Barbara Heller, Member-at-Large, MD Jerry Lerman, Member-at-Large, NY Kathleen Mimnagh, MD, Member-at-Large,WV Diane M. Sixsmith, MD, Member-at-Large,NY Benjamin Weisman, Member-at-Large, MA Priscilla Ciccariello, ChairEmeritus,NY Michael Weamer, Board Advisor, NY Professional AdvisoryBoard Alan C. Braverman, MD, Chair, WashingtonUniversity School of Medicine, MO Peter H. Byers, MD, University of Washington SchoolofMedicine,WA Duke Cameron, MD, Johns HopkinsHospital, MD Heidi Connolly, MD, Mayo Clinic, MN Joseph S. Coselli, MD, Baylor College ofMedicineandSt. Luke’s Episcopal Hospital, TX Jessica G. Davis, MD, New YorkPresbyterian Hospital-Weill Cornell Medical Center, NY Richard B. Devereux, MD, New York Presbyterian Hospital-Weill Cornell Medical Center, NY Hal Dietz, MD, JohnsHopkinsHospital, MD Sylvia A. Frazier-Bowers, DDS, PhD, University of North Carolina atChapelHill, NC Ronald V. Lacro, MD, Children’sHospital Boston. MA Irene Maumenee, MD, University of Illinois Eye andEar Infirmary, IL Dianna Milewicz, MD, PhD, University of Texas Houston Health Science Center,TX D. Craig Miller, MD, Stanford University School ofMedicine,CA Reed E. Pyeritz, MD, PhD, University of Pennsylvania School ofMedicine,PA Francesco Ramirez, PhD, Mount Sinai SchoolofMedicine,NY David L. Rimoin, MD, PhD, Cedars-SinaiMedical Center, CA Lynn Y. Sakai, PhD, Oregon Health Sciences University, OR Paul D. Sponseller, MD, Johns HopkinsHospital, MD Vincent L. Gott, MD, Johns HopkinsHospital, MD, Member Emeritus Victor A. McKusick, MD (1921–2008) Scientific Advisory Board Bjorn Olsen, MD, PhD, Chair, HarvardMedicalSchool, MA Craig T. Basson, MD, PhD, Novartis Institutes for Biomedical Research, MA John C. Carey, MD, Universityof Utah HealthSciences Center, UT Bruce D. Gelb, M.D., Mount SinaiSchool of Medicine, NY Christine Seidman, MD, Harvard Medical School, MA Robert W. Thompson, MD, Washington UniversitySchool ofMedicine,MO Richard J. Wenstrup, MD, MyriadGenetic Laboratories, Inc.,UT Victor A. McKusick, MD (1921–2008) Staff Carolyn Levering, President&CEO Judy Gibaldi, SeniorVice President,Operations&Finance Josephine Grima, PhD, VicePresident ofResearch&GovernmentRelations Jennifer Buffone, LCSW, Directorof Support Services&VolunteerDevelopment Jennifer Grignoli, Directorof Development Maggie Hogan, Directorof Foundation Relations &ConferencePlanning Jonathan Martin, Directorof Education &AwarenessPrograms Eileen Masciale, Directorof Communications, Newsletter Editor Brian Polk, Directorof Information Technology Cathie Tsuchiya, AdministrativeDirector&LocalFundraising Coordinator Kathy Jeffers, Managerof Volunteer Development Amy Kaplan, RN, Manager,InformationResourceCenter Alexandra Dubow, Design&Production
Connective Issues Atenolol vs. LosartanClinical Trial at 90% Enrollment: Final Opportunity to Participate As of August 10, there were 559 people enrolled in the atenolol vs. losartan clinical trial, which is looking at the effect of the two drugs on the aorta of people, age six months to 25 years of age, with Marfan syndrome. That means only 45 more people are needed to reach full enrollment. If you have afamilymemberwhomeetsthetrialcriteria(seeboxbelow), this is your final chance to get involved in this critical study. Why should you participate? Do you have access to Marfan-knowledgeable doctors at home? Have you always wanted your child to be seen by a doctor at one of the country’s leading Marfan syndrome clinics? This is your chance to receive medical care from leading Marfan physicians—whether they are in New York, Baltimore, St. Louis, Boston or any other trial site. Your medical care that is part of the research is free. In addition, the NMF can provide full scholarships for your travel and accommodations during the course of the trial—that’s five visits with doctors who know Marfan syndrome. Here are some questions our members asked at the Conference. Dr. Ron Lacro, Chidren’s Hospital Boston, co-principal investigator of the trial, provided the answers. Complete information about the clinical trial is available on the NMF website, www.marfan.org. If my child tried to enroll before but was not eligible, can we check again to see if he may be eligible now? Absolutely. If your child was not eligible in the past because his or her aorta was not big enough to qualify or if he or she did not meet the Ghent criteria for a Marfan syndrome diagnosis, it is possible that he or she may be eligible now. You should consult with your child’s physicians or a clinical trial site. If you do not live near a Marfan study site, the NMF can provide financial assistance to allow you to participate in the study for three years. (Call 800-8-MARFAN, ext. 26, to find out more about these scholarships.) When will the clinical trial be completed so we can determine if our four-year-old child should be put on losartan? We need to enroll 604 subjects to complete the trial, and we are more than 90 percent of the way there. We hope to complete enrollment by the end of 2010. Then everyone needs to be followed for three years. Therefore, we expect that in 2014 the main trial results will be analyzed and reported. There was research presented at the conference that showed positive results from losartan. If my child is in the study but appears to be taking atenolol, should he withdraw and be put on losartan? We have all heard the encouraging reports that losartan may be a promising alternative to beta blockers, such as atenolol, for treatment of individuals with Marfan syndrome. Most of these reports involve studies in animals or small numbers of children with extremely severe Marfan syndrome. Unfortunately, until we get the results from the trial, no one will really know which of these treatments—atenolol or losartan—is better for most people with Marfan syndrome. Therefore, it is very important for participants who are in the trial to continue on their assigned therapies so we can determine which therapy is better. If the study shows that losartan is effective, the FDA can approve the use of losartan for people with Marfan syndrome, and your insurance company will be more likely to cover the cost of losartan. If the results from the trial are positive, will the recommendation be for a person to continue their beta blocker and add losartan? Our trial is studying whether or not atenolol is more effective than losartan. We are not studying the effects of combination therapy. Other trials, such as a study currently being conducted in Italy, will determine whether taking both atenolol and losartan together is better than taking atenolol alone. We hope that the results of many studies currently being done will determine which therapies and which doses are best. Ultimately, your physician or your child’s physician will tailor the therapy that is best for your clinical situation. Who CanBe in the Trial? To be in the clinical trial you must: • Be betweenthe ages of six months and25 years atthe time you beginthe trial. • Have adiagnosisof Marfan syndrome. • Not be pregnant. • Not have had any aorticsurgery. • Not have serious side effects from either atenolol or losartan. • Not need to take atenololoranotherbeta blocker to treat a medical problem other than your dilated aorta. • Be willingand able to travel 5timesover 3yearstothe study siteforall studyechocardiograms and examinations. Volume 29, No. 3 3
Page 1: National MarfanFoundation: Educatio
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Page 7 and 8: MedQuest: Conference Q&A Connective
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Page 13 and 14: Connective Issues Maya Brown-Zimmer
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Page 21 and 22: People &Events Casino Night The 6th
Page 23 and 24: Connective Issues Mimnagh, Zimmerma

Fall 2010 - National Marfan Foundation

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