Guest guest Posted December 14, 1998 Report Share Posted December 14, 1998 Jodi, After reading your letter my heart is just breaking. Of all the " us " you should have been one of the ones to go to the research clinic. It's not just because you are our leader and work your butt off with not much more than an occasional thankyou, or because you have been through so much with your legs plus other medical problems, or you have gone to the trouble of learning more about rls than any of us (except you Dr. Levin) but because I think you would have been one of the biggest helps to us as you soak up knowledge like a spnoge. On top of that you have a way of relating that information to us in a way that is never judgemental or patritnizing, but always done in love and genunine care and concern. Not only have you missed a wonderful opportunity for help but because we all lose because you won't be able to share it with us!! Perhaps, since I turly believe things work out for the best interest of each paticular person there will be a real pofitive result for you to have made the decission you felt right about your not going. It took a lot of heart and I commend you. Somehow you will benefit from your decision beyond what you might think. (Off soap box!) I am truly sorry to hear that the rls came back with reinforcements for a while, I guess we don't know how lucky (or dependent, depends where you are coming from on this one) for the meds we do take just to make our ives liveable!! Some day. I hope we live long enough to see it, there will be a break through and prssoibly a cure for this insiddious disease. I know you must be feeling low right now, but just remember we all love you and are behind you 100%....that alone can be a balm on those wounded feelings right now!!! Much love and a lot of hugs Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 1998 Report Share Posted December 17, 1998 Jodi, said it so beautifully for all of us, I don't think there is much more we could add. Meg, NY. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 1998 Report Share Posted December 17, 1998 Jodi, said it so beautifully for all of us, I don't think there is much more we could add. Meg, NY. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 thanks Bill, but I never thought pam was working for Dr. Schults. no matters. Heck I am just so happy this research came about. Ok...funding...any particular number to mention for fund allocations? nancy Werre wrote: > > Hi all, > > Pam does not work for Dr. Shults and has nothing to do with the Study Group > itself. She works for a private firm and has a project with a deadline this > week. Please contact: > > Cliff Shults M.D. > Department of Neurosciences 0662 > Univ. of California San Diego - School of Medicine > 9500 Gilman Drive > La Jolla, CA 92093-0662 > > for any information on the project. It is NOT funded at this time, so write > your Congressmen, Senators and the President about funding this type of > project. We have NO more information on it than you do at this time. Yes, send > your information in to be on the list when and if it is funded, but we must wait > for Congress and the President to actually fund this research (as they did AIDS > this year). They set the priorities, not us. > > I will be out of town for the weekend also. Sorry, but we are volunteers. If > you want it funded, Pam and I can not do it - your Congress and President can do > it, call them and ask why MSA research is not funded. > > Take care, Bill Werre > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 , Here are a few Bills I feel should be supported (Note some may have already been turned down) and MY interpretation of them in red House of Representatives FOR H.R. 4014 To increase funding of Orphan Disease Products to $25 million per year (about the price of one fighter plane) FOR H.R. 4013 The establish the Office of Rare Diseases as a permanent Office in NIH and provide permanent funding (MSA is a rare disease) (see testimony asking for the same thing last year at:) http://www.rarediseases.org/news/speeches/senate Senate FOR S. 2439 Makes it a criminal act to clone a human being or even to place a blastocyst in an artificial womb, yet allows medical cloning of human cells for medical purposes. Ask your Senator to vote AGAINST S. 1899 This Bill would make it a criminal act to clone (grow two cells from one) any human cells for any purpose. I feel this would even ban stem cell research for adult cells as they are also cloned. It would also ban hopeful research currently in progress in Cancer, ALS, Juvenile diabetes, Birth Blindness and Parkinson's. There was also a Bill to provide $ 1 million for additional training for nurses in caring for patients with rare diseases, but it seems to have died already and I can not find it. Typical, they can not even find a million to help us get proper ER care. Take care, Bill Werre ------------------------------------------------------------------ ds401 wrote: thanks Bill, but I never thought pam was working for Dr. Schults. no matters. Heck I am just so happy this research came about. Ok...funding...any particular number to mention for fund allocations? nancy Werre wrote: > > Hi all, > > Pam does not work for Dr. Shults and has nothing to do with the Study Group > itself. She works for a private firm and has a project with a deadline this > week. Please contact: > > Cliff Shults M.D. > Department of Neurosciences 0662 > Univ. of California San Diego - School of Medicine > 9500 Gilman Drive > La Jolla, CA 92093-0662 > > for any information on the project. It is NOT funded at this time, so write > your Congressmen, Senators and the President about funding this type of > project. We have NO more information on it than you do at this time. Yes, send > your information in to be on the list when and if it is funded, but we must wait > for Congress and the President to actually fund this research (as they did AIDS > this year). They set the priorities, not us. > > I will be out of town for the weekend also. Sorry, but we are volunteers. If > you want it funded, Pam and I can not do it - your Congress and President can do > it, call them and ask why MSA research is not funded. > > Take care, Bill Werre > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 Greetings! I assume from what Pam said, I would not be a candidate for this study. They are looking for people with a diagnosis of Possible or Probable MSA. Is that correct? Just checking. However, I am very encouraged Dr. Shults decided to take on this effort. Research along this line always helps others. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 , I would send it anyway and let them decide. Take care, Bill Werre --------------------- " B. Fisher " wrote: > Greetings! > > I assume from what Pam said, I would not be a candidate for this study. > They are looking for people with a diagnosis of Possible or Probable > MSA. Is that correct? Just checking. > > However, I am very encouraged Dr. Shults decided to take on this effort. > Research along this line always helps others. > > Regards, > =jbf= > > B. Fisher Quote Link to comment Share on other sites More sharing options...
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