If you have a child with this disease...

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Please contact Montel Williams at

http://www.montelshow.com/show/tell-us/

and tell him your story under "my child is in crisis"

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You can also write in a general way about all the children who are suffering from the disease. You don't have to volunteer to be on the show. I'm sure that there are sufferers who would be willing to do it. As part of my comments, I suggested that they reach out to the MRF for more information. I just want someone to do a show on this -- get their producers interested.