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

Port Washington, NY (PRWEB) May 19, 2011

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 prot?g?, 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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About The Kids Foundation Releases The Emergency Standard Card and iPhone App to Help Save Lives in the United States

Los Altos, CA (PRWEB) May 25, 2011

In an ongoing effort to save lives, About The Kids Foundation today announced the release of The Emergency Standard Card, a wallet size card that includes a 3 color-coded process which provides instant status of a person?s up-to-date medical information, emergency and medical contacts, insurance details, blood type, power of attorney or healthcare directive, and photo verification.

The goal is to provide first time responders with immediate access to critical information when they arrive to the scene of an accident. The Emergency Standard Card is designed to help reduce misdiagnosis, improper emergency care or unnecessary expenditures, and most importantly, to save lives. In addition, the company is also introducing a companion iPhone app? the ICE Standard app is free for download at the Apple App Store: http://itunes.apple.com/us/app/ice-standard-the-emergency/id412786820?mt=8&ls=1#

?Today, there is no national emergency standard for first time responders when they arrive at the scene of an accident, find a person unconscious, report a fire, or when a high school athlete gets injured on the field,? said Joseph Ekman, founder of About The Kids Foundation. ?The lack of adequate, easy accessible medical data in critical care circumstances is a glooming defect in our nation?s medical response system. With The Emergency Standard Card or ICE Standard app, first responders gain immediate access to the person?s most important information, to quickly establish a patient?s medical baseline.

Ekman created The Emergency Standard Card and the ICE Standard app after having a cardiac monitor implanted in his chest just as he prepared to celebrate his 50th birthday. After leaving the hospital with a flimsy paper medical alert card acknowledging that he had a Reveal DX Cardiac Monitor in his chest, Ekman quickly realized that there was no standard for sharing comprehensive and critical medical information in the event of an emergency. Going from putting in 15-hour days working at Oracle Corporation, and coaching high school Lacrosse, to being considered permanently disabled, Ekman decided to do some research. He took a class at the University of San Francisco on the topic of emergency standards and wrote a paper highlighting his proposal for a national solution: http://www.emergencystandard.com, then formed a team of 75 advisors to launch the idea.

Carlos Trujillo, past Lacrosse coach from Stanford and Chapman Universities explains ?The Emergency Standard Card is a must-have for coaches at any level ? particularly for those teams who find themselves traveling away from home. A medical emergency is every coach?s worst nightmare, but having The Emergency Standard Card for each of my players ensures that if anything serious should ever occur, my team and my staff will be prepared, and all necessary precautions will be taken.?

With the official launch of the card and the app, About the Kids Foundation will be reaching out to first time responders such as paramedics, EMT's, fire departments, school districts, police departments, innocent bystanders, and other emergency response teams, as well as government officials, insurance providers, corporate sponsors and consumers to help establish the Emergency Standard Card as the official standard to help locate a person's updated medical information and contacts at the site of an accident.

?My husband has a medical alert bracelet, but it can very difficult to list all the relevant information and keep it up to date,? said Caroline Mehl, a resident of Elk Grove, CA who?s husband?s life depends on first responder?s ability to understand his medical history since having a liver transplant. ?A diabetic needs more than just an American Diabetes Association card. A liver transplant patient needs more than a medical alert bracelet. The Emergency Standard Card finally provides all the information first responders need.?

How The Emergency Standard Card Works

The Emergency Standard Card offers a color-coded system to help first responders effectively use the cards to act quickly: Red (Stop: Special Medical Condition), Yellow (Caution: Medications) and Green (Good to Go). The Emergency Standard Card includes an individual?s name and age, with a photo for clear and immediate verification.

The backside of the emergency card includes the person?s contact information, doctor?s name and phone number, medical insurance, medical information, blood type, medications, implanted medical devices, special medical conditions, and allergies, including a list of all prescription medication the individual currently takes. The card also contains emergency contacts and the ability to add custom fields such as a power of attorney.

The app includes the same features and will be readable even if the iPhone is shut down or has a lock screen in place. However, because batteries don?t last forever, and phones get lost or broken, the iPhone app should be considered a back up to the Emergency Standard Card.

Pricing and Availability

The Emergency Standard Card sells for $ 5.00 each, or the introductory special price of $ 8.50 for a complete family 6-card package. The $ 5.00 or $ 8.50 can be a tax deductable donation, or possibly even paid for with medical flex plan dollars. To order The Emergency Standard Card, call (408) 736-4266 or go to http://www.EmergencyStandard.com.

ABOUT THE KIDS FOUNDATION

Joseph A. Ekman is the founder of About The Kids Foundation. He was inspired 8 years ago to start the organization while helping his 5-year old daughter with her math homework using the Internet. He found it tedious to scroll through website after website, so began to keep a collection of his favorite homework web sites. He decided to put his pre-screened collection of math websites onto one web site? and the idea grew into other subjects like language, science and history that would help kids and parents manage homework. In 2011, Ekman added the mission of creating a National Emergency Standard Card to his vision for About the Kids. For more information about the company, please go to http://www.EmergencyStandard.com

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National Marfan Foundation Launches Mobile Site (MarfanDX.org) to Put Marfan Syndrome Diagnosis Directly into the Hands of Physicians

Port Washington, NY (PRWEB) June 06, 2011

A new mobile site ? http://www.MarfanDX.org ? was launched today by the National Marfan Foundation(NMF), to facilitate diagnosis of Marfan syndrome and related disorders. The site content is based on the new diagnostic criteria for Marfan syndrome that were published in the Journal of Medical Genetics(J Med Genet 2010;47:476-485). The site is compatible with Droid and iPhone smartphones.

?The new mobile site is an innovative use of new technology for doctors who are concerned about the possibility of underlying Marfan syndrome or a related connective tissue disorder,? said Mary Roman, MD, Professor of Medicine, Weill Cornell Medical College, and a member of the NMF Board of Directors. ?Marfan syndrome is a condition that has a varied expression and requires a multi-system clinical examination for diagnosis. The revised criteria simplified the complex process for diagnosis and provided insights into the diagnosis for conditions with overlapping features. The NMF?s new mobile site facilitates instantaneous access to diagnostic criteria for Marfan syndrome and provides diagnosis and management information for related disorders. This is a real benefit for busy doctors.?

Marfan syndrome and related disorders affect about 200,000 people in the U.S., but experts say that half of those affected are not diagnosed. Without a diagnosis and treatment, they are at risk of a sudden early death from a tear or rupture of their aorta. Related disorders, including Loeys Dietz syndrome, vascular Ehlers Danlos, mitral valve prolapse syndrome, familial aortic aneurysm and more, are outlined.

Features of the Mobile Site

According to a study conducted last year by Manhattan Research, a full 72 percent of U.S. physicians now use smartphones, and the number is expected to jump to more than 80 percent by 2012.

?With so many physicians utilizing smartphone technology,? says Dr. Roman, ?it makes sense to provide a resource that is compatible with the latest trends.?

The mobile site features a summary of the new diagnostic criteria, including seven simple formulae for diagnosing Marfan syndrome. Expandable text provides a detailed explanation of each formula.

The site also features:

Interactive Systemic Score Calculator used to consider the lesser characteristics of Marfan syndrome throughout the body that can be key in making the diagnosis. This too has expandable text and graphics, as well as ability to email results for patient file.

Interactive Z-score calculator, used to determine the size of the aorta compared to body surface area. This can also be emailed for the patient file.

Key points about the role of genetic testing and family history.

Important information on differential diagnosis and related disorders.

Helpful links and resources.

The mobile site is also viewable on a desktop computer; it is compatible with Safari and Firefox browsers.

This mobile web site was supported by the CDC Cooperative Agreement Number 1H75DD000703-01. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention.

Revised Diagnostic Criteria for Marfan Syndrome

The revised diagnostic criteria for Marfan syndrome were developed by an international team of medical experts led by Bart Loeys, MD, Center for Medical Genetics, Ghent University Hospital, Ghent, Belgium. The purpose was to streamline the diagnostic process in order to provide patients with a more accurate diagnosis and better medical management.

"While diagnostic criteria should emphasize simplicity of use and the desire for early diagnosis, the highest priority in developing these guidelines was accuracy," said Dr. Loeys.

Because connective tissue makes up the entire body, the disorder manifests itself in many body systems, including the skeletal system, eyes, lungs, blood vessels and heart. Many people with Marfan syndrome experience an expansion of the aorta. It is essential for affected people to be diagnosed and managed properly. Without proper monitoring and medications to reduce the stress on the aorta, affected people are at high risk for aortic dissection or rupture, which could result in sudden death. With an accurate diagnosis and proper medical treatment, they can live a normal lifespan.

The revised nosology provides a method for evaluating a patient by deriving a systemic score, with various features of Marfan syndrome assigned a numeric value; the diagnosis depends on the total systemic score. This is a change from the previous nosology which relied on evaluation of features as "major" or "minor."

The scoring system reflects three significant changes in the way Marfan syndrome is diagnosed:

The two cardinal features of Marfan syndrome - aortic root dilatation/dissection and ectopia lentis (dislocated lens of the eye) ? are weighted more heavily than other characteristics.

There is a more precise role for molecular testing.

Less specific manifestations of Marfan syndrome are either removed or given much less weight in the evaluation process.

The diagnostic criteria have been defined for those with a family history of the condition and for those who may be a sporadic case; that is, they are the first in their family to be

affected. Specific guidelines are also given for children (less than 20 years of age), with different scenarios proposed for those with family history and those without family history. For those who do not meet the diagnostic threshold for Marfan syndrome or a related condition, the nosology employs the diagnosis of "non-specific connective tissue disorder," which fosters ongoing monitoring of the aortic size and function, until such a time when a specific diagnosis can be made.

The nosology also offers additional diagnostic considerations and recommends more testing if a patient has sufficient findings of Marfan syndrome but, additionally, shows other unexpected features. The differential diagnosis and management for alternative diagnoses, such as Loeys Dietz syndrome, vascular Ehlers Danlos, mitral valve prolapse syndrome, familial aortic aneurysm and more, are outlined.

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 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, call 800-8-MARFAN or log on to http://www.marfan.org.

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