Guest guest Posted November 8, 2000 Report Share Posted November 8, 2000 Dear PLS Friends, I was in recent communication with Nailah Siddique, colleague and wife of Teepu Siddique, the physician who is doing genetic research at Northwestern University in Chicago. They have recently applied for two grants to fund some specialized equipment which, as I understand it, will play a key role in their PLS research. That is encouraging. What is DIScouraging, is the fact that they only have samples from 25 or so pairs of PLS siblings. My sister and I sent our blood samples in 1999. It was so easy to do. We just both went to whatever lab was most convenient for us to have our blood drawn (not a lot of blood). We then used the very convenient mailing kit that Northwestern had provided. I didn't even have to leave home to send it--just called Fed-Ex for pick up. Northwestern pays for the lab fee and the shipping. Why, oh why, with about 120 members of our e-group (I realize that not all are actual PLSers) has the response to Northwestern been so poor? Yes, we are raising money for PLS research through NORD but we should also be supporting already approved research projects. I also went to NIH for their study--that involves a trip to Bethesda which is more involved than sending a simple blood sample. With so many new members of our e-group, perhaps some are unaware of this study. I will contact Nailah Siddique to ask her to put a descriptor of the study and procedure for participating on-line to the group. I hope it will inspire others to participate. The more irons we have in the fire, the better for us. Dolores Carron Quote Link to comment Share on other sites More sharing options...
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