I was invited to speak to the Grants Committee at the American Legion Child Welfare Foundation. The National Marfan Foundation, my former employer, was a frequent recipient of grants, and the purpose of the presentation was two fold: 1) To explain Marfan syndrome, and 2) to share with the group the impact on children and teens who benefit from their funding.

1. Jonathan D. Martin, M.S.
Director of Education and
Public Awareness

2. 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.

3. 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 Advocacy
Support Services
Education and Public Awareness
NMF Senior Staff

4. 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

5. 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.

6. What Does MFS Look Like?
“Classic” Marfan Syndrome

7. What Does MFS Look Like?

8. Variable Expression

9. Anyone famous have it?
Maybe
…

10. Anyone famous have it?
Yes…

11. 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

12. 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!

13. 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”

14. How Do Your Genes Fit
1995 & 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

15. 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

16. 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

17. 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

18. 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!

19. 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

20. 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?!”

21. Teen Space on the Web
2007
 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

22. Teacher’s Resource
2008 – 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

23. Thank you for your
years of support!
We look forward to
many years
continuing this life-
saving partnership.