Questions; research info; introduction; tips

As some of you have seen, I have recently joined and am unfamliar with how this forum works. I have an extremely busy life with multiply disabled children, but because of such, I know the best way to get to the top of the food chain is to "find the feeders." All resources I have found for medical and mental needs for my own and my children's illnesses has been through contact with peers.

My friend is tired, and wants to 'give up' on searching for the various options she may have. I don't know what is out there or who is the "whose who" of such medical problems, but I do know this is how I found resources for myself and my children... finding doctors throughout the US that blow others out of the water with success statistics. Personally, I have taken my kids to specialists all over the US, after doing what I am trying to do for my friend now.

I am not saying she should or should not have any procedures, but I don't know who the leaders are with atypical pain. I am mathetical, but also believe that stats are numbers.... I have 3 daughters who each had a 30% chance of being alive; I have daughters who still have vision when initially told there was a less than 3% chance they would after finding one of hte leading doctors in teh world who specializes in Retinopathy of Prematurity. My daughter has a trach and now sees one of the worlds pioneers for airway reconstruction in Cincinnati. So, if my friend is losing her fight, I am going to put one out there for her.

I need to know about best treatments, leaders in the field; leading researchers; etc. I know there are those who possess expertice in excess of 'average.' Need resources to push this girl through and not allow her to give up the hope of living pain free.

Thanks in advance,



You have a leading most expert right in your own city! The experts in the field (I am sure there are more though) serve on the TNA advisory board.

Raymond F. Sekula, Jr., MD
Clinical Associate Professor of Neurosurgery
Director of Cranial Nerve, Skull Base and Microvascular Disorders
University of Pittsburgh Medical Center
Erie, PA

I am lucky in that one of the doctors from this medical advisory board is an hour from me. I have been to the clinic he runs and I feel that I am in the BEST possible hands that I could be in.