TheMarfanFoundation

@MarfanFdn

Through research, patient support, and education, The Marfan Foundation creates a brighter future for people living with Marfan syndrome & related disorders.

Port Washington, NY
Vrijeme pridruživanja: ožujak 2009.

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  1. Cynthia De Boer’s nephew, Jimmy, was born with neonatal Marfan. Now, she is unveiling her tribute to him, a children’s book, Jimmy’s Magic Turtle, and working to raise awareness of and funds for education and awareness.

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    For you, my access needs are probably just another chore on your to do list... but for me they are essential so that I can participate in the world. I ask that you think about how neglecting to make an adjustment in your life, business or community excludes disabled people.

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    It’s not just the active discrimination like the service refusals, it’s the daily grind of a world full of barriers & exclusions. It’s the forced smile & putting up with the excuses, the “oh sorry we forgot” & the exhaustion of planning & constantly finding coping mechanisms.

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    What I want non-disabled people to understand is how utterly humiliating it is when your access needs aren’t met. It’s not your fault but suddenly your needs feel so awkward & shameful. The embarrassment of being excluded is painful, especially when there is no solution.

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  5. proslijedio/la je Tweet
    6. velj

    Did you know February is also Marfan Awareness Month? Marfan syndrome is a genetic disorder that affects the body’s connective tissue. Features of the disorder are most often found in the and blood vessels. Learn more by checking out &

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    1. velj

    So important to spread the word. Marfan Syndrome has had a huge impact on my family.

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    prije 22 sata

    TBT He once stood on the shoulders of giants. Now he trains the next generation of aortic surgeons. Meet Dr. Joseph S. Coselli.

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    4. velj
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    4. velj
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  11. 5. velj

    "This is my Marfan Syndrome Warrior Princess Kelly (11 yrs old) and me (Mom) Tammy. We are wearing our Marfan Awareness sweatshirts and made 30 red ribbons & 30 pens to give our to family, Kelly’s teachers, and Kelly’s doctors for .

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  12. 5. velj

    South Florida is ready to Walk for Victory on Sunday! Many thanks to Mount Sinai Medical Center of Florida, Joe DiMaggio Children's Hospital, University of Miami Health System, Joy In Childhood Foundation, , , Join us:

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    31. sij

    This webinar has now been updated to include women’s health issues in VEDS as well!

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  15. 5. velj

    I'm Alexis and on 2/4/19, I was 12 weeks pregnant when I had a descending aortic dissection. I had it repaired a month later in Houston, Tx with Dr Coselli. If sharing my story can help at least one person then that is the greatest VICTORY of all!"

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    3. velj

    The Marfan Gene can be found in the FBN1 gene. However, there are people who are what is called a “ spontaneous Mutation.” No one in my family has/had and I am an only child. I am tall 5’11 but only have the eyes and heart symptoms. For doctors! I’m an enigma.

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    1. velj

    It’s officially awareness month! Posting all about it over on my Instagram! Just want to give a quick thank you to everyone over at for everything you guys have done, it’s amazing. I’m so glad to be a part of a community like this one. 💜

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    4. velj

    Although I diagnosed with Marfan syndrome and joint hypermobility syndrome, I felt relief because finally I know the cause of my pains. With all the pain I go through, I decided to support others with the same conditions

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  19. 3. velj

    Free download for those seeking or suspecting a diagnosis & help make sense of signs. Already have a Dx? Share this! You just might hand it to someone who needs this potentially life-saving information right now.

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    19. sij
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