Guest guest Posted August 21, 2001 Report Share Posted August 21, 2001 Luanne, I am planning on getting more samples from the patients who have participated. I am in the process of setting up a specific laboratory and database to handle the samples and information. You can tell people who are interested that I hope to be ready to do that by October, and that I will be sending out a letter to people on my mailing list. Jane Buckner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2001 Report Share Posted August 21, 2001 Thanks Lu for asking that for me. I will be the first to volunteer!!! W >>>>>>>>>>>>>>>>>>> Luanne, I am planning on getting more samples from the patients who have participated. I am in the process of setting up a specific laboratory and database to handle the samples and information. You can tell people who are interested that I hope to be ready to do that by October, and that I will be sending out a letter to people on my mailing list. Jane Buckner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2001 Report Share Posted August 21, 2001 In a message dated 8/21/01 3:15:25 PM Pacific Daylight Time, Lu1953@... writes: << I am planning on getting more samples from the patients who have participated. I am in the process of setting up a specific laboratory and database to handle the samples and information. You can tell people who are interested that I hope to be ready to do that by October, and that I will be sending out a letter to people on my mailing list. Jane Buckner >> Oh I guess I'll have to be second !!! LOL Lu thanks for keeping us posted and working with Dr. B. See, this is the kind of research that we need. To all the newbies, Dr. Jane Buckner is doing research at Virginia Mason Research Center in Seattle Washington... You may contact her and she will send you a kit for blood samples. Your lab will take the blood and send it to her... This is all free. There are instructions and a form for you to fill out with your history and a form for your dr to fill out and send back to her.... All that are interested, please do this... It may help us find a CURE sooner. You may contact her at: jbuckner@... She usually answers really fast. Just tell her you are interested in her research of RP and are willing to participate. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2001 Report Share Posted September 13, 2001 Lu, I want to again thank you for keeping in contact and gathering info from Dr. Buckner. I will definitely be emailing you privately. I feel this is just one small way I am contributing to helping find a cure for this horrible disease. Again, THANK YOU for all you're doing and have done. W >>>>>>>>>>>>>>>>>> Okay group we need an overwhelming response. Also if you have done it before and want to do it again, send me your name. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2001 Report Share Posted September 13, 2001 Lu, I want to again thank you for keeping in contact and gathering info from Dr. Buckner. I will definitely be emailing you privately. I feel this is just one small way I am contributing to helping find a cure for this horrible disease. Again, THANK YOU for all you're doing and have done. W >>>>>>>>>>>>>>>>>> Okay group we need an overwhelming response. Also if you have done it before and want to do it again, send me your name. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2001 Report Share Posted September 13, 2001 Hey, I gave my cup of blood and it was not a problem. The lab accepted Dr. Buckner's letter, instructions, etc and didn't ask me to pay a cent. It is the least that any of us can do. What exciting news. Love, Sharon Sharon, how long has it been since you gave the blood? Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2001 Report Share Posted September 13, 2001 Hey, I gave my cup of blood and it was not a problem. The lab accepted Dr. Buckner's letter, instructions, etc and didn't ask me to pay a cent. It is the least that any of us can do. What exciting news. Love, Sharon Sharon, how long has it been since you gave the blood? Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2001 Report Share Posted September 14, 2001 Lu... Would she be interested in someone who has not yet had a full blown flare and does not have an official diagnosis? Kim Sure Kim, just send me your name address and e-mail addy to Lu1953@aol and I will put you on the list. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2001 Report Share Posted September 14, 2001 Lu... Would she be interested in someone who has not yet had a full blown flare and does not have an official diagnosis? Kim Sure Kim, just send me your name address and e-mail addy to Lu1953@aol and I will put you on the list. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2001 Report Share Posted September 14, 2001 Lu... Would she be interested in someone who has not yet had a full blown flare and does not have an official diagnosis? Kim -----Original Message-----From: Lu1953@... Sent: Thursday, September 13, 2001 2:58 PMTo: Rpolychondritis Subject: News from Dr. BucknerHi Everyone, Dr. Buckner wrote me a letter today. If you want to participate in her research. Send me a private e-mail with your name address and phone number. I am compiling a list for her from our group. She was very excited in her letter. She told me she had been able to reach a much larger group of RP patients via letters and e-mail. The enthusiasm that these individuals have demonstrated has made this a very exciting time for her, also the increase has allowed her to expand her RP research program. I'm sure she will send you all this same letter after she gets the names of individuals who want to participate. Okay group we need an overwhelming response. Also if you have done it before and want to do it again, send me your name. I just can't express her enthusiasm in the letter. She feels that now she will soon be able to identify factors that may contribute to disease severity and predict response to therapy. She wants me to let you know the identity of each patient is kept confidential. The information gathered in all areas will be published in scientific journals as they make new discoveries. This fall she will be presenting some of her findings on RP at the meeting of American College of Rheumatology. She plans to expand the work over the next several years. The Virginia Mason Research Clinic has moved into new laboratories over the summer allowing her to physically expand her work, and she has been able to expand the scope of her work through financial support of donations and a grant from the arthritis foundation. She plans to remain in contact with all of the people who donate blood and who have already participated in this work. She also sent me a list of the research work she has outlined to do. In the next several weeks they will provide the information about this work on their website at www.vmresearch.org. But if anyone wants to know anything further just e-mail me. Please folks send me your name, address, phone number and e-mail address. Please send it to Lu1953@... We want to have a large group that will be willing to contribute their blood as an RP patient for research. This will not cost you at all. The donations she has received covers the cost. But we as a foundation want to contribute to her research, we need donations to do this. These are tax deductible, please look deep into your hearts, so we can send Dr. Buckner funds also. She is really going somewhere now with her research. We need to be in on it. But even more importantly, if you have not joined the Relapsing Polychondritis Support & Awareness Foundation, please do so now. WE need your help. The money we raise will help further research, it will help print brochures for education. Please try to find a way to send in your 15.00 yearly contribution or a larger amount will be greatly appreciated. We are all a team working for the same cause. Please be on this team with us! We cannot do it alone. We have to get our fundraising programs in action, there is so much work to do. Please try to dedicate something of yourself to help. To mail donations send them to the RP Foundation C/O Colloran 775 Bounty Place Manteca, CA 95337 To volunteer doing other things please send in what you can help do to Barbara Angerhofer her e-mail addy is angerhob@... Remember we are all volunteers, we are here for you. We all want answers,remissions, and a wonderful life. But we need all of your help.If any of you have any questions please e-mail me and I will try to get the answer for you. Or if you have any questions you would like for me to send to Dr. Buckner with the list of names, please send them to LU1953@.... Thanks! Love to you all! Lu DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2001 Report Share Posted September 14, 2001 Lu... Would she be interested in someone who has not yet had a full blown flare and does not have an official diagnosis? Kim -----Original Message-----From: Lu1953@... Sent: Thursday, September 13, 2001 2:58 PMTo: Rpolychondritis Subject: News from Dr. BucknerHi Everyone, Dr. Buckner wrote me a letter today. If you want to participate in her research. Send me a private e-mail with your name address and phone number. I am compiling a list for her from our group. She was very excited in her letter. She told me she had been able to reach a much larger group of RP patients via letters and e-mail. The enthusiasm that these individuals have demonstrated has made this a very exciting time for her, also the increase has allowed her to expand her RP research program. I'm sure she will send you all this same letter after she gets the names of individuals who want to participate. Okay group we need an overwhelming response. Also if you have done it before and want to do it again, send me your name. I just can't express her enthusiasm in the letter. She feels that now she will soon be able to identify factors that may contribute to disease severity and predict response to therapy. She wants me to let you know the identity of each patient is kept confidential. The information gathered in all areas will be published in scientific journals as they make new discoveries. This fall she will be presenting some of her findings on RP at the meeting of American College of Rheumatology. She plans to expand the work over the next several years. The Virginia Mason Research Clinic has moved into new laboratories over the summer allowing her to physically expand her work, and she has been able to expand the scope of her work through financial support of donations and a grant from the arthritis foundation. She plans to remain in contact with all of the people who donate blood and who have already participated in this work. She also sent me a list of the research work she has outlined to do. In the next several weeks they will provide the information about this work on their website at www.vmresearch.org. But if anyone wants to know anything further just e-mail me. Please folks send me your name, address, phone number and e-mail address. Please send it to Lu1953@... We want to have a large group that will be willing to contribute their blood as an RP patient for research. This will not cost you at all. The donations she has received covers the cost. But we as a foundation want to contribute to her research, we need donations to do this. These are tax deductible, please look deep into your hearts, so we can send Dr. Buckner funds also. She is really going somewhere now with her research. We need to be in on it. But even more importantly, if you have not joined the Relapsing Polychondritis Support & Awareness Foundation, please do so now. WE need your help. The money we raise will help further research, it will help print brochures for education. Please try to find a way to send in your 15.00 yearly contribution or a larger amount will be greatly appreciated. We are all a team working for the same cause. Please be on this team with us! We cannot do it alone. We have to get our fundraising programs in action, there is so much work to do. Please try to dedicate something of yourself to help. To mail donations send them to the RP Foundation C/O Colloran 775 Bounty Place Manteca, CA 95337 To volunteer doing other things please send in what you can help do to Barbara Angerhofer her e-mail addy is angerhob@... Remember we are all volunteers, we are here for you. We all want answers,remissions, and a wonderful life. But we need all of your help.If any of you have any questions please e-mail me and I will try to get the answer for you. Or if you have any questions you would like for me to send to Dr. Buckner with the list of names, please send them to LU1953@.... Thanks! Love to you all! Lu DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2001 Report Share Posted September 16, 2001 Lu1953@... wrote: > > Hi Everyone, > > Dr. Buckner wrote me a letter today. If you want to participate in her > research. Send me a private e-mail with your name address and phone > number. I am compiling a list for her from our group. > > She was very excited in her letter. She told me she had been able to > reach a much larger group of RP patients via letters and e-mail. > The enthusiasm that these individuals have demonstrated has made this > a very exciting time for her, also the increase has allowed her to > expand her RP research program. > > I'm sure she will send you all this same letter after she gets the > names of individuals who want to participate. Okay group we need an > overwhelming response. Also if you have done it before and want to do > it again, send me your name. > I just can't express her enthusiasm in the letter. She feels that now > she will soon be able to identify factors that may contribute to > disease severity and predict response to therapy. > > She wants me to let you know the identity of each patient is kept > confidential. > > The information gathered in all areas will be published in scientific > journals as they make new discoveries. This fall she will be > presenting some of her findings on RP at the meeting of American > College of Rheumatology. > > She plans to expand the work over the next several years. The Virginia > Mason Research Clinic has moved into new laboratories over the summer > allowing her to physically expand her work, and she has been able to > expand the scope of her work through financial support of donations > and a grant from the arthritis foundation. > > She plans to remain in contact with all of the people who donate blood > and who have already participated in this work. She also sent me a > list of the research work she has outlined to do. > > In the next several weeks they will provide the information about this > work on their website at www.vmresearch.org. > > But if anyone wants to know anything further just e-mail me. > Please folks send me your name, address, phone number and e-mail > address. Please send it to Lu1953@... > > We want to have a large group that will be willing to contribute their > blood as an RP patient for research. This will not cost you at all. > The donations she has received covers the cost. > > But we as a foundation want to contribute to her research, we need > donations to do this. These are tax deductible, please look deep into > your hearts, so we can send Dr. Buckner funds also. She is really > going somewhere now with her research. We need to be in on it. > > But even more importantly, if you have not joined the Relapsing > Polychondritis Support & Awareness Foundation, please do so now. WE > need your help. The money we raise will help further research, it will > help print brochures for education. Please try to find a way to send > in your 15.00 yearly contribution or a larger amount will be greatly > appreciated. > > We are all a team working for the same cause. Please be on this team > with us! We cannot do it alone. We have to get our fundraising > programs in action, there is so much work to do. Please try to > dedicate something of yourself to help. To mail donations send them to > the > RP Foundation > C/O Colloran > 775 Bounty Place > Manteca, CA 95337 > > To volunteer doing other things please send in what you can help do to > Barbara Angerhofer her e-mail addy is angerhob@... > > Remember we are all volunteers, we are here for you. We all want > answers,remissions, and a wonderful life. But we need all of your > help.If any of you have any questions please e-mail me and I will try > to get the answer for you. Or if you have any questions you would like > for me to send to Dr. Buckner with the list of names, please send them > to LU1953@.... > > Thanks! > Love to you all! > Lu > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2001 Report Share Posted September 16, 2001 Lu1953@... wrote: > > Hi Everyone, > > Dr. Buckner wrote me a letter today. If you want to participate in her > research. Send me a private e-mail with your name address and phone > number. I am compiling a list for her from our group. > > She was very excited in her letter. She told me she had been able to > reach a much larger group of RP patients via letters and e-mail. > The enthusiasm that these individuals have demonstrated has made this > a very exciting time for her, also the increase has allowed her to > expand her RP research program. > > I'm sure she will send you all this same letter after she gets the > names of individuals who want to participate. Okay group we need an > overwhelming response. Also if you have done it before and want to do > it again, send me your name. > I just can't express her enthusiasm in the letter. She feels that now > she will soon be able to identify factors that may contribute to > disease severity and predict response to therapy. > > She wants me to let you know the identity of each patient is kept > confidential. > > The information gathered in all areas will be published in scientific > journals as they make new discoveries. This fall she will be > presenting some of her findings on RP at the meeting of American > College of Rheumatology. > > She plans to expand the work over the next several years. The Virginia > Mason Research Clinic has moved into new laboratories over the summer > allowing her to physically expand her work, and she has been able to > expand the scope of her work through financial support of donations > and a grant from the arthritis foundation. > > She plans to remain in contact with all of the people who donate blood > and who have already participated in this work. She also sent me a > list of the research work she has outlined to do. > > In the next several weeks they will provide the information about this > work on their website at www.vmresearch.org. > > But if anyone wants to know anything further just e-mail me. > Please folks send me your name, address, phone number and e-mail > address. Please send it to Lu1953@... > > We want to have a large group that will be willing to contribute their > blood as an RP patient for research. This will not cost you at all. > The donations she has received covers the cost. > > But we as a foundation want to contribute to her research, we need > donations to do this. These are tax deductible, please look deep into > your hearts, so we can send Dr. Buckner funds also. She is really > going somewhere now with her research. We need to be in on it. > > But even more importantly, if you have not joined the Relapsing > Polychondritis Support & Awareness Foundation, please do so now. WE > need your help. The money we raise will help further research, it will > help print brochures for education. Please try to find a way to send > in your 15.00 yearly contribution or a larger amount will be greatly > appreciated. > > We are all a team working for the same cause. Please be on this team > with us! We cannot do it alone. We have to get our fundraising > programs in action, there is so much work to do. Please try to > dedicate something of yourself to help. To mail donations send them to > the > RP Foundation > C/O Colloran > 775 Bounty Place > Manteca, CA 95337 > > To volunteer doing other things please send in what you can help do to > Barbara Angerhofer her e-mail addy is angerhob@... > > Remember we are all volunteers, we are here for you. We all want > answers,remissions, and a wonderful life. But we need all of your > help.If any of you have any questions please e-mail me and I will try > to get the answer for you. Or if you have any questions you would like > for me to send to Dr. Buckner with the list of names, please send them > to LU1953@.... > > Thanks! > Love to you all! > Lu > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2001 Report Share Posted September 19, 2001 Thank you Barbara Angerhofer, I sent you some volunteer names the other day did I send them to the wrong place? If I did I am sorry. I need your address . Thanks for helping! We appreciate you. love Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2001 Report Share Posted September 19, 2001 Thank you Barbara Angerhofer, I sent you some volunteer names the other day did I send them to the wrong place? If I did I am sorry. I need your address . Thanks for helping! We appreciate you. love Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2001 Report Share Posted September 22, 2001 and that info is probably here some where in these 350 messages!!! I got a virus in my computer and it has been in the shop for a couple of days. I haven't lost any messages - I'm just getting through them - so will let you know when I find the information on volunteers. Thanks again Barbara Hey Barbara, If you did lose it by some chance I probably have a note of it somewhere around here. Sorry to hear about your computer. I guess I would really be lost without mine I need to start backing up stuff. You take care, Love u Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2001 Report Share Posted September 22, 2001 and that info is probably here some where in these 350 messages!!! I got a virus in my computer and it has been in the shop for a couple of days. I haven't lost any messages - I'm just getting through them - so will let you know when I find the information on volunteers. Thanks again Barbara Hey Barbara, If you did lose it by some chance I probably have a note of it somewhere around here. Sorry to hear about your computer. I guess I would really be lost without mine I need to start backing up stuff. You take care, Love u Lu Quote Link to comment Share on other sites More sharing options...
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