Marfan Syndrome

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PUBLICATIONS PRINT Marfan Syndrome: A to Z Featuring vivid illustrations of diverse children and families in real-life situations, Marfan A to Z normalizes the child’s experience with Marfan syndrome. A specialized illustration style lets children complete coloring in the pictures (more coloring pages are available online) and have fun finding the hidden pictures on each page. A glossary of helpful terms is included for parents. Written collaboratively by a committee consisting of parents of affected children, an affected adult, an elementary school teacher, a genetic counselor, social workers, and NMF staff members. The illustrations were created by award-winning author and illustrator Lori Mitchell. Book; 34 pages. Recommended for children ages 4–8. Order your free copy online at www.marfan.org. Funded by a grant from the American Legion Child Welfare Foundation
PUBLICATIONS PRINT Marfan Does Not Mean Martian An inspirational story about Marvin, a boy diagnosed with Marfan syndrome, and the friendship he builds with his new neighbor Joe. The story educates children about Marfan syndrome while teaching them about diversity and acceptance. Written by a teenager who has Marfan syndrome, Elias Clark Turner, and illustrated by Alexandra Dubow. Book; 28 pages. Recommended for children ages 8–12. Available for purchase for $5.00 online at www.marfan.org.
Page 1 and 2: Marfan Syndrome: Need-to-Know Infor
Page 3 and 4: TABLE OF CONTENTS 1. Introduction a
Page 5 and 6: INTRODUCTION Marfan syndrome affect
Page 7 and 8: Features of Marfan syndrome Marfan
Page 9 and 10: 2 Special Needs of a Student with M
Page 11 and 12: Goals Both types of plans share the
Page 13 and 14: MEDICAL ISSUES, IMPACT ON THE STUDE
Page 15 and 16: Skeletal system continued Accommoda
Page 17 and 18: Pulmonary system Medical Issues •
Page 19 and 20: EMERGENCIES First and foremost, chi
Page 21 and 22: SOCIAL AND PSYCHOLOGICAL ISSUES Stu
Page 23 and 24: 3 Special Resources for the Physica
Page 25 and 26: Changes in connective tissue that c
Page 27 and 28: Classification of sports & activiti
Page 29 and 30: Guidelines and modifications for sa
Page 31 and 32: Musculoskeletal System The most obv
Page 33 and 34: Emergencies and how to recognize th
Page 35 and 36: Suggested physical activities and a
Page 37 and 38: Provide instruction in selecting ap
Page 39 and 40: 4 Additional Resources
Page 41 and 42: Marfan Syndrome Facts Continued fro
Page 43 and 44: How to Find Out if You Have Marfan
Page 45 and 46: CLASSROOM ACTIVITY: WORD SEARCH Mar
Page 47 and 48: CLASSROOM ACTIVITY: CROSSWORD PUZZL
Page 49: CLASSROOM ACTIVITY: WORD CLOUDS A
Page 53 and 54: PUBLICATIONS ON CD Marfan Syndrome:
Page 55 and 56: PUBLICATIONS ON DVD Marfan Syndrome
Page 57 and 58: OTHER RESOURCES Understanding Genet
Page 59 and 60: Living with Marfan syndrome III. Qu
Page 61 and 62: PRODUCED BY The National Marfan Fou

Marfan Syndrome

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