Johns Hopkins research/donations
Date: Fri, 6 Dec 1996 10:02:08 -0500 From: Robert Tollen <mensabrain@SMART.NET> Subject: A call for directed MPD donations
Dear Folks,
I contacted Dr. Spivack yesterday, thanking him for sharing with us the latest research out of Johns Hopkins on PV/MF. I asked him if there was any way that donations could be made, but be directed specifically towards continuing research on PV/ET/MF/AMMM. His favorable response is posted below.
Our subscribers and family members have a vested interest in seeing that research continues at the most expedient pace at Hopkins. The Johns Hopkins team has recently identified PV as a disease of accumulation vs. over production, and identifying an intracellular signaling defect which appears to be unique to polcythemia vera and idiopathic myelofibrosis. These findings are one additional research step towards an eventual controlling treatment that will hopefully stabilize the disease, or even possibly lead researchers in the direction of a cure.
We often read about an alumni or benefactor donating literally millions to a college or a medical cause. I think, well, is my $5 or $50 or $500 REALLY going to make any significant difference. I say that in this case, it will. I have no idea if our donations will make a major impact on the progress of research at Hopkins, but I urge each of you to consider sending something, no matter WHAT the amount or your current personal financial situation. Just the act of receiving SOMETHING from so many MPD patients will HAVE to inspire and encourage the myeloproliferative disease research team at the Hematology Department at Hopkins.
I urge anyone and everyone also subscribed to other medical lists to please forward to those subscribers this post in it's entirety.
Regards,
Robert Tollen
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Dr. Spivack's response:
Johns Hopkins Hematology Division, Department of Medicine, The Johns Hopkins University, School of Medicine, Traylor Building, Room 924 Baltimore, Maryland 21205 Fax 410-955-0185 Telephone Number 410-955-5454
Date: 12/5/96 To: Robert Tollen From: Jerry L. Spivack, M.D.
Remarks: Thank you for your fax of 12/5/96. The Hematology Division has a gift fund, contributions to which would be used solely to support research on the myeloproliferative disorders (PV/ET/IMF). Contributions should be made payable to The Hematology Division, Johns Hopkins University School of Medicine and sent to the above address. All contributions are gratefully received and personally acknowledged. As soon as we have all our administrative obligations in order, I will inform you about patient participation.
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Ref:
>Our subscribers would be very interested if you would possibly >expound a little on the "have very promising new data about the >disorder" part. > >Many of our subscribers regionally local to Baltimore are most >likely interested in the details on contributing to your >research efforts with fresh blood samples. Would we need to >drive to Hopkins in Baltimore to have blood drawn? What's >involved. I am a 48 yo m, dx'ed with PV in 1990, live in >Columbia, MD and I have been on Intron-a for the last two >years. I get a CBC and a CHEM II every 3-4 weeks from one of >the local MD Medical Lab stations here in Columbia. I still get >a phlebotomy every two months or so to keep my HCT = to or < >42-43. > >Regards, > >Robert Tollen >
>> >*** > >To: mensabrain@smart.net From: jlspivak@welchlink.welch.jhu.edu >(Jerry L. Spivak, M.D.) Subject: Re: To Dr. Spivack >
>Sorry for the delayed response to your query. We now know that >polycythemia vera erythroid progenitor cells differentiate >faster than normal erythroid progenitor cells and even more so >when there is little erythropoietin present. Furthermore, and >more importantly, polycythemia vera erythroid progenitor cells >survive better in the absence of erythropoietin than normal >ones. Therefore, polycythemia vera is not a disorder of over >production, it is a disorder of accumulation. We also now have >data about an intracellular signaling defect which appears to >be unique to polcythemia vera and idiopathic myelofibrosis, a >related disorder, which may prove to be a useful screening test >to distinguish these disorders from other diseases which mimic >them, and which might also explain the platelet function defect >of polycythemia vera and idiopathic myelofibrosis. We need now >to study more patients to solidify our findings. We are >currently modifying our informed consent form to conform to our >current research activities. However, given the recent volume >of e-mail and formal consults concerning polcythemia vera and >its companion disorders, we are planning to open a special >clinic here devoted solely to them where patients can get a >complete evaluation and recommendations for therapy which they >can take back to their personal physician. This would allow us >to develop a data base about the natural history of these >disorders and also research and therapeutic protocols which are >not biased by false intuition. More information will be >forthcoming as I work through the administrative aspects of >this and we will have a Website as well.
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