Fall 2010 - National Marfan Foundation

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16 Connective Issues Marfan Syndrome and Related Disorders: Resources from the NMF What are the bone and joint problems associated with Marfan syndrome? What is the difference between Marfan syndrome and Loeys- Dietz syndrome? Why does my child with Marfan syndrome need to see an eye doctor every year? Idon’tunderstandallthemedicalinformationmydoctoris telling me. Can you help? If you or a family member was recently diagnosed with Marfan syndrome or a related disorder, or if you are facing new challenges in your medical journey, the NMF is the first place to turn for information and support. The Foundation has a comprehensive library of publications and videos to meet your needs. Some of the most sought after information for people with Marfan syndrome and their families includes: • Heart of the Matter Fact Sheets An easy-to-understand series covering basics about getting diagnosed; heart, eye, bone and joint issues; clinical trial information; and more. • Marfan Syndrome A to Z Avibrant,full-colorpicturebook that gives explanations and support for children living with Marfan syndrome. • Marfan Syndrome: A Guide for Teens Abookletthathelpsteenslearnaboutlivingwithand managing Marfan syndrome. • Marfan Syndrome, sixthedition Acomprehensiveguidetodiagnosisandmanagementof Marfan syndrome, including information on each affected body system. For specific questions, feel free to contact the Information Resource Center at 800-8-MARFAN or support@marfan.org. In addition, you can attend the Foundation’s 27th Annual Conference in Portland, Oregon, July 14–17, 2011, to hear the country’s leading Marfan experts discuss the condition and how it is treated. Fall 2010 Educating Others Members frequently contact the NMF wondering what resources are available to educate other people about Marfan syndrome and related disorders. Some resources are free to specific target audiences under funding from various sources, such as the American Legion Child Welfare Foundation. Other materials are available for a nominal fee in the NMF Store at www.marfan.org. (Note: If you have a planned educational activity, free resources may be available. Be sure to ask your NMF contact when setting up your event.) The NMF has developed specific resources to help healthcare professionals diagnose and manage Marfan syndrome and/or aortic dissection. These include: • Emergency Medicine Campaign Kit • Marfan Syndrome: Needto-Know Information for the School Nurse • Treatment Overviews for Orthopedics and Cardiology There are also materials that address Marfan syndrome features and diagnosis more broadly and are intended to help raise public awareness. These include: • Heart of the Matter DVD • Marfan Syndrome At-a-Glance Bookmark • Marfan Syndrome and Related Disorders Brochure • PublicAwarenessandBasketballPosters • How Do Your Genes Fit? DVD and Discussion Guide “The most important thing to remember about selecting which of our resources is right for your event or activity is matching the resource to the audience. Some of our materials are specifically designed to grab interest quickly and provide averycursoryoverviewofMarfansyndrome,whileothers are designed to give in-depth medical information for health professionals. Our staff is here to help you figure out what’s most effective for your project,” said Jonathan Martin, NMF Director of Education. Please visit www.marfan.org to explore all the valuable resources about Marfan syndrome and related disorders that are offered by the NMF.
On July 30, sixteen NMF members participated in a Lobby Day on Capitol Hill in Washington, DC. Four teams made over 25 congressional visits. In addition to educating legislators and staff about Marfan syndrome and the NMF, and sharing personal patient stories, we promoted the following issues on the Hill: • $35 billion for the NIH in FY2011 (12% increase) • NIH support for Marfan syndrome research, particularly the losartan clinical trial and a proposed study of longterm surgical outcomes in Marfan syndrome patients who undergo valve-sparing or valve replacement procedures. • Legislation allowing rare disease patients to receive compensation for participation in clinical trials without that compensation being included in their income calculation that determines eligibility for Supplemental Social Security Income and Medicaid. The NMF also presented Congressman Gary Ackerman (D-NY) with its 2010 Public Policy Leadership Award. Congressman Ackerman championed the successful legislative effort to provide federal funding from the U.S. Centers for Disease Control and Prevention (CDC) to the NMF in 2010 for a Marfan syndrome awareness program. We want to thank the Mid-Atlantic Chapter and others who ventured to Washington, DC, to support this important effort. Connective Issues National Marfan Foundation Visits Capitol Hill Traveling for Surgery continued from page 8 • Pack lightly, but pack the things that are most important to the patient and family members who will be there. If you’re spending the night in the hospital, follow your normal daily habits (if you put on make-up every day, do this even if sleeping in the hospital each night). It may seem silly now, but it normalizes your life just a bit. • We left a gift at our house for Henry (on his bed) and he knew about it, so he could look forward to it upon his return. • If you are leaving siblings at home, inform their teachers about what’s going on so they are aware of the stress in the family. Set up a support system for the siblings, too, as they are going to be worried and going through this without you (for the most part). In addition, schedule regular calls, e-mails, texts, i-chats, etc. Have them stay NMF President and CEO Carolyn Levering presented the Foundation’s 2010 Public Policy Leadership Award toCongressmanGary Ackerman(D-NY). with people they really love and feel supported by. Ask some of their favorite people to visit/contact them on a regular basis. • Create a system for updating everyone. We used Caringbridge.org, which helped keep everyone updated and gave us ongoing support. Mark Silver, who lives in the Los Angeles area, traveled to Stanford, in Northern California three times for aortic surgery. He said, “Going away for a surgery like this actually carries a built-in element of reassurance. After all, the patient is going away to a distant hospital specifically because the care, experience or techniques are better there or more suited to the patient’s needs. In the case of Stanford, the obvious excellence, confidence and expertise of everyone on the service helped to set my mind and nerves at ease.” Volume 29, No. 3 17
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Fall 2010 - National Marfan Foundation

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