National Marfan Foundation Celebrates 30th Anniversary with Opportunity to Win $500,000 from Chase Community Giving

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Vote May 19-25 on Facebook to Support the NMF's Life-Saving Work

The NMF is particularly concerned with getting children diagnosed and treated earlier and providing them with the information, support and camaraderie that can help them live successfully.

The National Marfan Foundation, a non-profit working to extend the life and enhance the quality of life for people with Marfan syndrome and related disorders, is competing with charities nationwide for donations ranging from $20,000 to $500,000 through the Chase Community Giving program. Individuals can help in the effort to ensure their favorite charity’s success by simply voting for the National Marfan Foundation through the Chase Community Giving program running on the Facebook platform.

In Round 1 of the Chase Community Giving program this Spring, the NMF won $25,000, as it finished among the top 100 vote-getters among participating charities (#28). In Round 2, which begins May 19, the top vote-getter receives $500,000, and the next 24 top charities earn amounts ranging from $20,000 through $400,000. The program is designed to benefit 501c3 charities with operating expenses between $1 and $10 million. More than $5 million dollars will be distributed to top vote getters. Facebook users can vote for the NMF at http://bit.ly/idGTZt through May 25.

The date that the voting begins, May 19, is thirty years -- to the day -- since the very first meeting of the National Marfan Foundation (NMF).

“The NMF is constantly striving to strengthen our community, and is particularly concerned with getting children diagnosed and treated earlier and, then providing them with the information, support and camaraderie that can help them live successfully with their condition. Receiving even $20,000 would be an unbelievable opportunity to ensure the great work of this organization continues,” said Carolyn Levering, NMF President and CEO.

Joanne Jordan, of Corona, CA, knows first-hand the value of the NMF’s programs and services. Her son, Michael, has Marfan syndrome and has benefited greatly by attending four NMF annual conferences.

"I am a non-Marf mom, so to have my son have the experience of meeting others like him was more precious than anything I could ever do. It was great for his self-esteem and the value of meeting others with his same issues was priceless. Michael has had aortic surgery and scoliosis surgery so his chest is a road map of scars. He was overjoyed because he finally felt like he could go swimming with no shirt with the other Marfan teens. Everyone understood and he didn’t have to explain anything. What a freeing experience for him. It was little things like that that I had never thought of, but meant so much to him. Michael is now 22, working two jobs and going to college. He still wants to go to the Conference. What a testament to what the NMF does."

How You Can Help:
You can help the National Marfan Foundation win up to $500,000 by simply “Liking” the Chase Community Giving program at: http://apps.facebook.com/chasecommunitygiving/ and casting your vote for the National Marfan Foundation at http://bit.ly/idGTZt.

Marking the 30th Anniversary:
The NMF started as a small support group in the living room of Dr. Victor McKusick, widely acclaimed as the “Father of Medical Genetics,” and was led by Dr. McKusick’s protégé, Dr. Reed Pyeritz, now chief of medical genetics at the University of Pennsylvania School of Medicine. The Foundation gained tremendous momentum when Priscilla Ciccariello, a former Port Washington librarian, became involved.

Tragedy first struck Priscilla’s family in 1969, when her oldest son, 21-year-old Steve, died of an aortic dissection while running a race during his senior year at Washington University in St. Louis. It was determined that the aortic dissection was caused by Marfan syndrome, a genetic disorder of connective tissue, and that her husband, Charlie, and two of her remaining sons also had the life-threatening condition. For many years, she found very little information on Marfan syndrome and found no other people who were affected.

Everything changed, for both the Ciccariellos and the NMF, once Priscilla learned about the support group that was taking shape. Her involvement gave the NMF a boost as Priscilla was “off and running.”

The organization quickly planted roots at the kitchen table of her Port Washington home and she set her sights on three key areas: education, research and support. Her vision and persistence – with legislators on Capitol Hill, with directors at the National Institutes of Health, with scientists in leading laboratories – has paid huge dividends

Now, 85 and living in Sag Harbor, Ciccariello has much to be proud of.

  •     The NMF has provided approximately $10 million as part of its research program, funding grants, fellowships and symposia, and is now supporting a critical clinical trial that is being funded by the National Heart, Lung, and Blood Institute and conducted by the Pediatric Heart Network
  •     The Foundation has a comprehensive support network, including a toll-free Information Resource Center, 52 chapters and support groups nationwide, and its own on-line social networking platform, NMFconnect. It also holds an annual conference where affected people and their families can learn from experts in the field; this summer nearly 500 people are expected to attend the 27th Annual Conference, co-sponsored by Oregon Health Sciences University and Shriners Hospital in Portland, OR.
  •     The Foundation’s education and awareness efforts among the medical community and the general public have led to better diagnosis of affected people. This has enabled people to get the treatment they need to avoid a sudden early death from a tear or rupture of their aorta, the large artery that takes blood away from the heart. Most recently, the NMF launched http://www.MarfanDX.org, a mobile website for smartphones that puts the diagnosis criteria directly into the hands of doctors, thus facilitating diagnosis for people with Marfan syndrome and overlapping conditions.

Marfan Syndrome:
Marfan syndrome is a connective tissue disorder that affects the heart, blood vessels, eyes, bones, joints and lungs. It is often, but not always, characterized by a tall stature and disproportionately long legs and arms. Other skeletal manifestations are curvature of the spine, a protruding or indented chest and loose joints. The most serious problem associated with the Marfan syndrome is its effect on the aorta, the main artery carrying blood away from the heart. In affected people, the aorta is prone to progressive enlargement, which can lead to tears in the aortic wall that require surgery. If aortic enlargement and tears are left undetected, the aorta may rupture, leading to sudden death.

The life expectancy for people with Marfan syndrome who are diagnosed and treated is now in the 70s due to advances in cardiovascular surgery, increased options in medical therapy and better diagnosis.

Approximately 200,000 people in the U.S. have Marfan syndrome or a related connective tissue disorder. In most cases, the condition is inherited; one-quarter of people with Marfan syndrome are the first in their family to be affected.

About the National Marfan Foundation:
The National Marfan Foundation is a non-profit voluntary health organization dedicated to saving lives and improving the quality of life of individuals and families affected by the Marfan syndrome and related disorders by:

  •     Educating affected individuals, family members and the health care community about the Marfan syndrome.
  •     Advocating for and funding clinical and molecular research into the early detection and treatment of Marfan syndrome.
  •     Providing a network of local and special-interest support groups to help affected people and their families share experiences.

For more information on Marfan syndrome, contact the NMF at 800-8-MARFAN or visit the NMF’s web site at http://www.marfan.org.

About Chase Community Giving:
Chase Community Giving is a program inspiring a new way of corporate philanthropy by letting participants vote to help determine which non profits will receive donations from Chase’s philanthropy funds. The program is giving away over $5 million in grants to charities nationwide, with focuses including arts and culture; education and youth development; environment; animal welfare; health and social services; community development; medical research and awareness; recreation and sports; and international development.

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Eileen Masciale
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