presentation to american legion child welfare foundation
DESCRIPTION
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.TRANSCRIPT
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Jonathan D. Martin, M.S.Director of Education and
Public Awareness
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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.
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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
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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
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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.
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What Does MFS Look Like?
“Classic” Marfan Syndrome
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What Does MFS Look Like?
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Variable Expression
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Anyone famous have it?Maybe
…
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Anyone famous have it?Yes…
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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
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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!
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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”
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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
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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
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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
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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
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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!
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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
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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?!”
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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
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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
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Thank you for your years of support!
We look forward to many years continuing this life-saving partnership.