Progress Made in Funding for NMF

The NMF is grateful to U.S. Rep. Gary Ackerman (D-Queens/L.I.) who announced earlier this week that $900,000 he requested for local health and education funding has been passed by a key appropriations subcommittee. Of these funds, $250,000 is designated for the National Marfan Foundation.

The money, included the appropriations bill for Labor, Health and Human Services, Education and Related Agencies, is expected to be passed by the full House later this month. Once passed by the House, the bill would head to the Senate. It would also require that the President sign the measure into law. The monies are for the government's FY10, which begins on October 1, 2010.

More details can be found in Rep. Ackerman's complete statement.

Screening of In My Hands

In My Hands, a new documentary about Marfan syndrome that was produced by Sister Productions, was screened for the first time at the NBC Universal Screening Room in New York City on May 27. The film -- created by Tony Award winner Ann Reinking, Brenda Siemer Scheider, who is Roy Scheider’s award-winning wife, and Emma Joan Morris -- is a moving, heartwarming account of learning to live with Marfan syndrome. Mayor Michael Bloomberg was on hand to introduce the film to a packed room of VIPs and friends.(The photo features, l-r, Hal Dietz, MD, Emma Joan Morris, Mayor Michael Bloomberg, Ann Reinking, Brenda Siemer Scheider, NMF President and CEO Carolyn Levering and NMF Board member Karen Murray.)

The documentary features several individuals and families who have faced medical and psychosocial challenges with Marfan syndrome. It was filmed partly at the NMF's Annual Conference at Stanford University in 2007.

The screening was featured on Hamptons.com this week, thanks to Ann Watt, the long-time friend of the NMF who started the Tall Club of New York City and is now a professional photographer. She was our volunteer photographer at the screening and brought a colleague, John Wegorzewski, who lost a sister to Marfan syndrome. John writes for Hamptons.com and Ann often provides the site with photos.

The NMF is thrilled with the coverage, which gives us exposure among the film community that is on the East End of Long Island after Memorial Day (as well as the Internet coverage which is, of course, worldwide).

The film makers -- and the NMF -- are looking for further distribution and broadcast opportunities. Leads can be directed to Jonathan Martin, NMF Director of Education and Awareness, jmartin@marfan.org.

NMF on NBC's Today Show

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.

More Marfan Awarness with RENT

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.

New Medical Journal Announced: Science Translational Medicine

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.

Impact of Marfan Syndrome Storyline on TV's "ER"

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.

Read the entire Daily News article.

Marfan Syndrome Public Awareness in St. Louis

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.