Jonathan D. Martin, M.S.Director of Education and

Public Awareness

Founded in 1981 by a group of affected individuals and their families who were seeking answers that even their doctors didn’t seem able to provide them, the NMF is based in Port Washington, New York on Long Island.

With a staff of 20 full and part time employees, and a National Volunteer Network of chapters, support groups and individuals, we work further a 3 pronged mission:

Research and AdvocacySupport ServicesEducation and Public Awareness

NMF Senior Staff

What is Marfan Syndrome, anyway?

• Genetic Disorder of Connective Tissue that affects approximately 1 in 5,000 people

• Affects men, women and people of all racial and ethnic backgrounds equally

• 75% inherited – 25% spontaneous mutation• Affects multiple body systems including

– Heart and blood vessels– Skeleton and joints– Eyes– Lungs– Skin

Early and correct diagnosis is vital!

• It is generally expected that, without proper diagnosis and treatment, a person with Marfan syndrome is a very high risk of aortic dissection and rupture in their 30’s or 40’s.

• Proper medical management, monitoring of the diameter of the aorta, and timely surgical intervention offers hope of living a normal life-span!

People with Marfan syndrome are at up to 250 times greater risk of Aortic dissection than the general population.

People with Marfan syndrome are at up to 250 times greater risk of Aortic dissection than the general population.

What Does MFS Look Like?

“Classic” Marfan Syndrome

What Does MFS Look Like?

Variable Expression

Anyone famous have it?Maybe

…

Anyone famous have it?Yes…

Special Considerations for Children and Teens

• EARLY AND CORRECT DIAGNOSIS IS VITAL• Physical disabilities• Self-esteem and fitting in• Severely limited physical activity– NO

BASKETBALL, FOOTBALL, VOLLEYBALL• Medications and surgeries can affect school

performance• Anxiety over living with life-threatening disorder

Children and Teen Programs

Since 1989, the NMF has received numerous grant awards from the American Legion Child Welfare Foundation, enabling us not only to improve the lives of children and teens affected with MFS and their families, but also to SAVE LIVES that might otherwise have been lost!

Poster/School Awareness - 1989

Tens of thousands of schools were reached with a poster that highlighted the physical features of MFS urging people to speak up if you see the signs in a loved one because “you could save a life”

How Do Your Genes Fit1995 & 1997

Video program for middle school aged children using MFS as a case study for understanding how genes contribute to what makes us all different

Added Discussion guides for teachers and support groups with follow up grant in 1997

LabAids, Inc has included this program in their science curriculum as a standard resource for genetics education

Pediatric Concerns/Physician Outreach

2000 Produced new brochure

highlighting the important issues to consider regarding children and teens

Reached tens of thousands of pediatricians through direct mail campaign

Coaches and Athletic Directors 2002

Produced new brochure highlighting the importance of physical activity modifications for people with MFS to prevent life threatening aortic aneurysm

Coupled with our popular basketball poster and reached 35,000 coaches and athletic directors in middle and high schools across the country via direct mail campaign

Marfan Syndrome: A Guide for Teens 2004

Produced new booklet for teens: How MFS is diagnosed and

treated Coping and planning for the

future Peer commentary and advice Taking responsibility for own

care Marfan resources

Disseminated thousands through Marfan clinics, NMF conference, and via web

Marfan Syndrome: Need-to-Know Information for the School Nurse - 2005

Produced and disseminated CD-rom resource to help school nurses ID students in need of

evaluation Make gentle yet urgent

referral Manage medical needs of the

student Educate student, faculty and

staff

Continues to be our most requested resource ever!

Marfan Syndrome A to Z Children’s Book 2006

Wrote, illustrated, printed and disseminated storybook designed to normalize a child’s experience with MFS while educating them about their condition

Response:

“I cried with hope and joy when I opened this book.”

“For the first time, my son has an educational resource that helps him understand his experience of being a child with Marfan syndrome.”

“It is interactive, making it fun for us to read together.”

“He has been sharing the book with his cousins and friends so they understand his condition.”

“It is both visually stunning and very professional looking. How do you do it on such a limited budget?!”

Teen Space on the Web2007

Created a special Teen Space on the NMF website featuring Ask a Question Teen Talent Highlights Peer Leadership Conference Recaps

Created and launched NMFconnect, a Facebook –like social network which now has thousands of members connecting through chat, goups, forums, events, etc

Teacher’s Resource2008 – Coming SOON!

Creating a special guide for teachers to help students with MFS get the most out of their educational experience, including Classroom modification Lesson plans Fact sheets Individualized Education Plans and

other entitlement resources

Groundbreaking new scientific research released this summer that required a delay to ensure that this resource would not be outdated as soon as it was released

Will incorporate many of the wonderful resources we have created in the past

Thank you for your years of support!

We look forward to many years continuing this life-saving partnership.