Presentation to American Legion Child Welfare Foundation

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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.

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  • Share story about woman from American Legion House from Phoenix conference!
  • Presentation to American Legion Child Welfare Foundation

    1. 1. Jonathan D. Martin, M.S.Director of Education andPublic Awareness
    2. 2. Founded in 1981 by a group of affected individuals and theirfamilies who were seeking answers that even their doctors didn’tseem able to provide them, the NMF is based in Port Washington,New York on Long Island.
    3. 3. With a staff of 20 full and part time employees, and a NationalVolunteer Network of chapters, support groups and individuals, wework further a 3 pronged mission:Research and AdvocacySupport ServicesEducation and Public AwarenessNMF Senior Staff
    4. 4. What is Marfan Syndrome, anyway?• Genetic Disorder of Connective Tissue that affectsapproximately 1 in 5,000 people• Affects men, women and people of all racial and ethnicbackgrounds equally• 75% inherited – 25% spontaneous mutation• Affects multiple body systems including– Heart and blood vessels– Skeleton and joints– Eyes– Lungs– Skin
    5. 5. Early and correct diagnosis is vital!• It is generally expected that, without properdiagnosis and treatment, a person withMarfan syndrome is a very high risk of aorticdissection and rupture in their 30’s or 40’s.• Proper medical management, monitoring ofthe diameter of the aorta, and timely surgicalintervention offers hope of living a normallife-span!People with Marfan syndrome are at up to 250 times greater risk of Aortic dissectionthan the general population.People with Marfan syndrome are at up to 250 times greater risk of Aortic dissectionthan the general population.
    6. 6. What Does MFS Look Like?“Classic” Marfan Syndrome
    7. 7. What Does MFS Look Like?
    8. 8. Variable Expression
    9. 9. Anyone famous have it?Maybe…
    10. 10. Anyone famous have it?Yes…
    11. 11. Special Considerationsfor Children and Teens• EARLY AND CORRECT DIAGNOSIS IS VITAL• Physical disabilities• Self-esteem and fitting in• Severely limited physical activity– NOBASKETBALL, FOOTBALL, VOLLEYBALL• Medications and surgeries can affect schoolperformance• Anxiety over living with life-threatening disorder
    12. 12. Children and Teen ProgramsSince 1989, the NMF has received numerous grantawards from the American Legion Child WelfareFoundation, enabling us not only to improve the livesof children and teens affected with MFS and theirfamilies, but also to SAVE LIVES that might otherwisehave been lost!
    13. 13. Poster/School Awareness - 1989 Tens of thousands ofschools were reachedwith a poster thathighlighted the physicalfeatures of MFS urgingpeople to speak up ifyou see the signs in aloved one because “youcould save a life”
    14. 14. How Do Your Genes Fit1995 & 1997 Video program for middle schoolaged children using MFS as a casestudy for understanding howgenes contribute to what makesus all different Added Discussion guides forteachers and support groups withfollow up grant in 1997 LabAids, Inc has included thisprogram in their sciencecurriculum as a standard resourcefor genetics education
    15. 15. Pediatric Concerns/Physician Outreach2000 Produced new brochurehighlighting theimportant issues toconsider regardingchildren and teens Reached tens ofthousands ofpediatricians throughdirect mail campaign
    16. 16. Coaches and Athletic Directors2002 Produced new brochurehighlighting the importanceof physical activitymodifications for peoplewith MFS to prevent lifethreatening aorticaneurysm Coupled with our popularbasketball poster andreached 35,000 coachesand athletic directors inmiddle and high schoolsacross the country via directmail campaign
    17. 17. Marfan Syndrome: A Guide for Teens2004 Produced new booklet forteens: How MFS is diagnosed andtreated Coping and planning for thefuture Peer commentary and advice Taking responsibility for owncare Marfan resources Disseminated thousandsthrough Marfan clinics, NMFconference, and via web
    18. 18. Marfan Syndrome: Need-to-KnowInformation for the School Nurse - 2005 Produced and disseminatedCD-rom resource to helpschool nurses ID students in need ofevaluation Make gentle yet urgentreferral Manage medical needs of thestudent Educate student, faculty andstaff Continues to be our mostrequested resource ever!
    19. 19. Marfan Syndrome A to Z Children’s Book2006 Wrote, illustrated,printed anddisseminated storybookdesigned to normalize achild’s experience withMFS while educatingthem about theircondition
    20. 20. Response:“I cried with hope and joy when Iopened this book.”“For the first time, my son has aneducational resource that helps himunderstand his experience of being achild with Marfan syndrome.”“It is interactive, making it fun for us toread together.”“He has been sharing the book withhis cousins and friends so theyunderstand his condition.”“It is both visually stunning and veryprofessional looking. How do you do iton such a limited budget?!”
    21. 21. Teen Space on the Web2007 Created a special Teen Spaceon the NMF website featuring Ask a Question Teen Talent Highlights Peer Leadership Conference Recaps Created and launchedNMFconnect, a Facebook –like social network which nowhas thousands of membersconnecting through chat,goups, forums, events, etc
    22. 22. Teacher’s Resource2008 – Coming SOON! Creating a special guide for teachers tohelp students with MFS get the mostout of their educational experience,including Classroom modification Lesson plans Fact sheets Individualized Education Plans andother entitlement resources Groundbreaking new scientific researchreleased this summer that required adelay to ensure that this resourcewould not be outdated as soon as itwas released Will incorporate many of the wonderfulresources we have created in the past
    23. 23. Thank you for youryears of support!We look forward tomany yearscontinuing this life-saving partnership.

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