Marfan Syndrome: Need-to-Know Information for the Teacher is a new online resource that provides teachers with basic information about Marfan syndrome, information on classroom accomodations for students with Marfan syndrome incluiding information about IEPs and 504 orders, special information and physical activity guidelines for PE teachers, and classroom activities to help other children and teens better understand what students in their school who have Marfan syndrome cope with. View this online resource now.
Awareness Saves Lives! Interested in raising awareness in your community but not sure how? Check out these new awareness project kits, "RENT Awareness Campaign Guide" and "Tell the World About Marfan Syndrome: A Guide to Planning An Awareness Table." These new guides/tool kits provide step by step information on how to organize these awareness activities and provide you with everything you will need to host a successful awareness event. Visit the National Marfan Foundation's online Volunteer Tool Kit to learn more about these awareness projects and others. Interested in volunteering for the NMF, contact Kathy Jeffers, Manager of Volunteer Development, at email@example.com
Started by Melissa Riley in Uncategorized 23 hours ago.
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Posted by fewfw on May 25, 2013 at 5:10am
Well... I am on the NMF Teen Council soo if you have any questions or anything you can contact me.. I will reallly try to be on here more ofter. Just these past months have been CRAZY!! I had to switch school because my last school was treating me so unfair due to my syndrome. Then I have been trying to get my pain manageable.
So far things have been good. My grades are back to straight A's and I am now officiallly a JUNIOR!!! Oh yes.
Hard to believe that high…
Posted by Gabby on May 20, 2013 at 8:35pm
Just wanted to put this out because over the last 40 some years I have learned that doctors are not always the revered God like personas that I have been raised to believe they are, they do not always know the best solution, especially for us Marfan patients.
In 2005, I had surgery in April for an abdominal aneurysm repair and in Dec. I had a valve replacement and an aortic aneurysm repair. My doctor at the time, whom I do consider to be God like did both surgeries. Tho my lung…Continue
Posted by Bonnie Kawell on May 20, 2013 at 3:37pm
So I loved game of basketball since i was a little kid not knowning i was going to be this tall 7'1'' 18 year old guy but i knew i had mafan. I been playing basketball all my life knowing I had Marfans but that never stoped me. i played basketball 8th grade until the disrtict found out i had Marfan. I've had many doors closed on me but I keep pushing foward. I been playing AAU basketball now for 3 years and all i want to do is play basketball my Senior year for my high school this up coming…Continue
Posted by Angel Jesus Flores on May 15, 2013 at 10:42am
Posted by Chris Eslick on May 11, 2013 at 1:48am