Musings of a Marfan Mom

In My Hands

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In July 2007, Tony-award winning choreographer Ann Reinking came to the National Marfan Foundation conference at Stanford to start filming a documentary on Marfan syndrome. Her son has the disorder and, as a choreographer, Ann recognized the beauty of the Marfan body and wanted to celebrate it while also bringing increased awareness.

Finally her project of love, In My Hands, is complete. Tomorrow, Rosie O’ Donnell will be interviewing Ann and Dr. Frank Pollaro, a New York cardiologist who also has Marfan. The story behind this interview is definitely worth telling.

One night not too long ago the NMF’s head of health education, Jonathan Martin, went to go see a show on Broadway. Afterwards he waited by the stage door to meet the stars, Rosie included. Ever devoted to our cause, Jonathan gave Rosie a copy of In My Hands and asked her to watch it, which she promised to do. She contacted him a few days later having loved the documentary and they + Eileen (our head of PR) worked to make this interview possible.

We are so lucky to have someone like Jonathan working for us! He is always thinking of new ways to educate people about Marfan and make our lives easier. Very late Saturday night he IMd me to let me know that clips of In My Hands were available on YouTube; he’d spent the evening getting them ready. That is dedication! So, on behalf of Marfs everywhere, THANK YOU JONATHAN for all that you do!

I’ve got two clips to share! First is the introduction to the documentary.
[youtube=http://www.youtube.com/watch?v=hhwobxc-R20]

Next, you’ll see two more of my favorite people, Katie and Kami. Aren’t they gorgeous? They’re two of “my” teens and I am so proud of them! Incidentally, they’re also spotlighted this quarter on our teen program website. This segment brings tears to my eyes.
[youtube=http://www.youtube.com/watch?v=w74TLpAczTc]

Over the next few days I’ll post some other clips from the documentary. I haven’t gotten to see the entire presentation yet, but I’m very excited about it. From what I can tell, Ann and her team have done a phenomenal job capturing the Marf spirit and beauty. Call me biased, but I think Marfs are some of the most beautiful people and it’s my wish that every single one of the teens would believe and embrace this. I hope this documentary, which focuses on a small group of our teens, will help them all see that.

For more information on In My Hands, go here.

For more information on how to listen to Rosie’s show tomorrow (including a free 7 day trial of Sirius Radio), go here.

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10 Comments

  1. It really is a beautiful documentary and I am so grateful to Anne and her team, as well as all the teens who agreed to be involved (either on camera or by sharing their stories with the filmakers behind the scenes). A truly powerful movie that everyone should see. Thanks for posting!

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  2. Maya,

    What a great post! Thanks for the “shout-out.”

    It is absolutely MY pleasure to do this work. While neither I nor anyone in my family have Marfan syndrome, I can tell you with all sincerity that I love the Marfan community as if it were my own.

    Working with Ann Reinking on this project has been incredibly rewarding on many levels, and I am thrilled to see it finding its way to the public.

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  3. From the clips, the documentary looks absolutely amazing. I look forward to seeing more! And in case Katie and Kami should happen to read this, I went to high school with Maya and I never thought she was anything other than lovely, both inside and out. There are all sorts of bodies in the world, and there’s no such thing as a perfect one. Marf bodies are elegant and lithe. You are beautiful!

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  4. Greetings!
    Stopping by from SITS. Have a great week!
    Jeanette

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  5. hey SITS Gal!!! Great post look forward to read more

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  6. honestly i had never heard of this syndrome before but i watched the clips and i was so touched by the young girls stories…they are so brave for being able to talk about their fears on camera! thanks for sharing this with us :)

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  7. Great post. I am going to watch these clips later when the kiddos are not needy (aka – when they are asleep).

    Holly

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  8. Thanks for stopping by my blog and passing it on to a friend!

    I wish I could watch your video clips here at work but sadly I cannot :( I’ll be sure to check them out when I get home!

    ♥ Miss Dot :)

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  9. Dear Maya
    I so love all that you do and the support you are able to offer (despite your hectic life – not sure where or how you find the time). Although they are now leaning towards a diagnosis of EDS for Lee, he insists he will be a “Marf” for life!
    Hugs
    Debbie

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  10. Beautifully inspiring. =]

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