Heartworks grows in 2009-- New York City, Westchester, New York and St. Louis all to host Gala fundraisers this spring!
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The National Marfan Foundation is pleased to present its 25th Annual Conference on Marfan Syndrome and Related Disorders at Mayo Clinic in Rochester, MN August 6-9, 2009.
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More patients needed for Atenolol vs. Losartan Clinical Trial. This study is looking at possible new treatments to reduce aortic enlargement in people with Marfan syndrome.
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Be prepared! New tool helps you compile infomation you will need in the event of an emergency.
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The National Marfan Foundation is pleased to announce the creation of NMFconnect, our very own online community. You've tried Facebook and MySpace... Now join the community created just for you!
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Family Health History The NMF has created a Family Health History template to help you compile important health information about you and your family members to save time during early diagnostic appointments. It can also be used to determine other health risks not related to Marfan syndrome.
New NMF Website The NMF website is now more accessible and user-friendly than ever before. It has improved navigation, enhanced graphics, videos and increased interactivity. If you are affected with the disorder, a medical professional or just looking for information, we invite you to visit often to read the rotating features on the home page, see new photos and videos, and ask your personalized questions. You can get even more connected to the NMF by joining our own social network, NMFconnect.
"Connective Issues" Newsletter Connective Issues is the official newsletter of the National Marfan Foundation and is published three times a year. View a sample copy and subscribe now.
Original stars Anthony Rapp and Adam Pascal join the National Tour of RENT now through July 2009 As RENT continues to tour and is performed by regional theater groups and college and high schools around the country, Jonathan’s family, in conjunction with the National Marfan Foundation, is hoping that more people will learn about Marfan syndrome and get the diagnosis and treatment they need to avoid the potentially fatal aortic dissection that struck Jonathan Larson.
Marfan Syndrome A - Z New children’s picture book, "Marfan Syndrome A to Z" now available from the National Marfan Foundation. The purpose of the book is to normalize a child’s experience with the disorder while providing educational opportunities and a gateway for conversation between parents and children.
"Mo" motion picture is now available on iTunes and Amazon.com "Mo" is based on the true story of a boy with Marfan syndrome growing up on the south shore of Long Island, New York. How his parents support him, how his wacky brother keeps him laughing, and how his friends help him to escape. Watch the movie to see how he copes with daily life and prepares for heart surgery. It's a story you will never forget.
GenTAC Registry: Participate in Research The GenTAC Registry will collect clinical data and samples on patients with aneurysms and dissections that are caused by genetic alterations.
Celebrate the 25th anniversary of the conference at the renowned Mayo Clinic in Rochester, Minnesota, August 6-9, 2009. Select this link for information on the programs, conference scholarship, registration and other details: NMF Annual Conference
Thank you for your interest in Marfan syndrome. For immediate assistance, media may contact Eileen Masciale, Director of Communications, 631-665-2163, publicity@marfan.org
We can arrange interviews with leading experts on Marfan syndrome, as well as with individuals affected by the disorder. Electronic photographs are also available.
On Thursday, April 30, the NMF celebrated another successful event, Heartworks: The Marfan Gala, with NBC's Brian Williams and Hoda Kotb serving as masters of ceremonies. The following morning, on the Today Show, Hoda talked about her evening with us and they showed some photos.
We are so grateful to Hoda, Brian and NBC for their continued commitment to the NMF, and thank all Heartworks supporters ? every dollar counts!
Photos from the event have also been posted on-line, thanks to Ann Watt, a former Tall Club member who now works for NY Social Diary. Stay tuned for more photos (and fundraising results) in the next couple of weeks on the NMF website and in the Spring issue of Connective Issues.
Pictured above are: (l-r) Hoda Kotb; Tony Award winning choreographer Ann Reinking, a dinner chair; Karen Murray, President, VF Corporation, event corporate host and NMF Board member; NYC Mayor Michael Bloomberg; Randy Falco, long-time media executive and 2009 Hero with a Heart Award recipient; Carolyn Levering, NMF President and CEO; and Michael Weamer, Executive Vice President, American Heart Association, and 2009 Hero with a Heart Award recipient. Photo courtesy of Ann Watt.
When one door closes, another door opens. So it is for the Broadway show, RENT, the multi-award winning hit musical, which finished its run on Broadway on September 7.
Now, school, community and regional theatrical productions of RENT will bring the words and music of playwright Jonathan Larson, to an even greater audience. It will also bring an increased number of opportunities for Marfan syndrome awareness.
The NMF worked closely with the licensing group to ensure that information about Marfan syndrome is included in the packet that local groups receive when they are going to stage the performance.
The drama club at Temescal Canyon High School, in Lake Elsinore, CA, is one group that is taking advantage of this opportunity for Marfan syndrome education. You can read about how RENT was more than a theater production for these students in their local paper, The North County Times.
The American Association for the Advancement of Science announced this week that it will launch a new journal dedicated to translational medicine in the Fall. Translational medicine uses insights from basic biology to improve medical care. The former director of the National Institutes of Health, Elias Zerhouni, MD, will be chief scientific advisor.
In explaining translational medicine in its press release, AAAS cites as an example the work of NMF Professional Advisory Board member Hal Dietz, MD, and his colleagues at Johns Hopkins. They successfully studied losartan in mice engineered to have Marfan syndrome and now, in cooperation with the National Heart, Blood and Lung Institute and the Pediatric Heart Network, are involved in the clinical trial to test losartan in people with Marfan syndrome.
The NMF has always been a strong proponent of translational research, encouraging research that bridges the gap from the bench (lab) to bedside (patient care). The NMF?s research grant program has a history of funding this research and lauds AAAS for choosing to focus on it in its new journal.
Hal Dietz, MD, will serve on the publication?s advisory board.
As NBC's long-running hospital drama, ER, ends this week, the accolades for the show are rolling in. The NMF, too, applauds all that ER has done. As many in the Marfan community probably remember, Marfan syndrome was included in the story line in October 2001. Lee Norton (second from left in the photo), a teenager with Marfan syndrome, actually acted as the Marfan patient and the story line had significant implications for the ER staff that season. More important for the NMF, the Foundation was able to leverage that show and generate extensive media coverage for Marfan syndrome on NBC affiliate stations nationwide, in newspapers, such as the New York Times (see story here), and in medical publications.
The impact still resonates in the medical community. Yesterday's New York Daily News included a feature about how ER inspired real-life doctors. The top eight episodes were cited and the Marfan story was included. The Daily News reporter wrote:
"The Longer You Stay," Season 8: Dr. Dave Malucci (Erik Palladino) thinks a patient is having a myocardial infarction - aka a heart attack - and administers a blood thinner; however, the patient actually has an aortic dissection from Marfan syndrome, and the meds help kill him. "Myocardial infarction and aortic dissection present in similar fashion, so it's not an easy diagnosis to make," says McCarthy. "As an ER doctor, I frequently worry about making this mistake myself."
We hope many lives were saved as a result of ER and the follow-up coverage.
The St. Louis media has always been very interested in Marfan syndrome. When the NMF held its Heartworks Gala there on March 7, it gave us the opportunity to capture the interest of the local media again. This was an excellent public awareness piece, featuring Dr. Angela Sharkey, the pediatric cardiologist who heads the clinical trial (losartan vs. atenolol) at St. Louis Children's Hospital, and NMF member Amber, a seven-year-old who is in the study. It aired on Monday, March 16.
Labels: Marfan Syndrome Awareness in St. Louis Comments
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The NMF gratefully acknowledges Rick Guidotti and Timothy D. Joyce for their generosity in providing the photography for this website.
The National Marfan Foundation is dedicated to saving lives and improving the quality of life for individuals and families affected by Marfan syndrome and related disorders.
