From: TSS ()
Subject: re-NIH to destroy our loved ones brain tissues
Date: May 28, 2005 at 4:29 pm PST
I have snipped a great deal out below, but here is a letter i sent out to several members of Texas Government officials asking for there help in the NIH issue with our loved ones brain tissue samples that these families had painfully willingly donated to help scientist find what is causing these sporadic CJD cases, to help find a cure, and to help find testing that can find this agent way before death and even maybe soon enough some day to stop it all together from developing. we can hope.
BUT, most did not even bother replying to my plea for help, Senator Kay Bailey Hutchison did not even bother with this one about CJD and the NIH issue with these donated tissue samples. The last letter from her I recieved was the same rubber stamp letter from the Gov. on BSE when they send one out to the public that is concerned. She never addressed my concerns.
HOWEVER, one kind Senator did seem concerned enough to fire off a letter to NIH. Senator John Cornyn wrote them about our concerns and here is the reply from NIH. The good news is that we finally have it in writing that NIH will not destroy our loved ones brain tissue samples that were donated for science. There have been concerns from many that we have no official promise and or anything in writing about this, other than florence kranitz long conversation with Major and his 'uncertain terms'. well that was just not good enough and the lack of freezer space excuse was not flying either.
Both Singeltary and Ewanitz said they would feel more reassured if Major verified in writing the collection will not be destroyed.
Florence Kranitz, president of the non-profit advocacy group CJD Foundation, told UPI she had "a very long conversation" with Major, in which he told her the remaining tissues in the collection would not be destroyed.
"He reassured me in no uncertain terms," Kranitz said, noting constituents of the foundation and other CJD advocacy groups had been expressing concerns to her the tissues would be destroyed.
Kranitz, who has personal reasons for wanting the collection preserved -- her husband died of CJD in 2000 -- said she plans to meet with Major at the end of April to discuss the issue further.
NIH sends mixed signals on CJD brains
By Steve Mitchell
I will first post the beginning of my letter to these officials asking for help.
I will then post the letters from the Honorable Senator Cornyn and would like to thank him for pursuing this for us,
and getting this in writing. It meant a lot to all of us.
Thanks to Steve Mitchell of UPI for his continued efforts to find the truth about all human and animal TSEs,
and his continued efforts in trying to keep the USDA/APHIS/FDA/CDC/NIH Federal Officials honest and forth coming.
However, it's kinda like pulling teeth sometimes, all for the safety and security of US citizens i am sure.
IN the reply from NIH back to Senator Cornyn on this issue, there were some concerns of mine that i will bring up and
comment on later below...TSS
-------- Original Message --------
Subject: NIH to destroy our loved ones brain tissues, WE NEED YOUR HELP PLEASE
Date: Fri, 25 Mar 2005 16:04:57 -0600
From: "Terry S. Singeltary Sr."
CC: Judith.Zaffirini@senate.state.tx.us, Bob.Deuell@senate.state.tx.us, District98.Truitt@house.state.tx.us, District115.Jackson@house.state.tx.us, Jane.Nelson@senate.state.tx.us, District96.Zedler@house.state.tx.us, Jon.Lindsay@senate.state.tx.us, firstname.lastname@example.org, email@example.com
Greetings again Honorable Senator Hutchison and other HonorableMembers of Texas Office,My name is Terry S. Singeltary Sr. I lost my Mother to hvCJD aka mad cow.THE Heidenhain Variant of Creutzfeldt Jakob Disease.(there is more than one strain of mad cow disease and i will reference last)I am once again writing to you on a matter of extreme importance. I wouldappreciate your assistance in writing to the National Institutes of Healthrequesting that the brain tissue collected over the years at NINDS from familymembers of Creutzfeldt-Jakob Disease victims be preserved and recorded and notdiscarded. [See attached articles]THE WASHINGTON TIMESUNITED PRESS INTERNATIONALNIH may destroy human brain collectionBy Steve MitchellMedical CorrespondentWashington, DC, Mar. 24 (UPI) -- The National Institutes of Health may discard part or all of a rare collection that includes hundreds of human brain samples from patients that suffered from a disorder similar to mad cow disease -- unless another researcher or institution takes them on, United Press International has learned.Several scientists said the collection, which is held by the NIH's National Institute for Neurological Disorders and Stroke in Bethesda, Md. -- and includes brains and other tissue samples from people afflicted with the brain-wasting illness Creutzfeldt Jakob disease -- is irreplaceable and could even provide insight into treatments for the fatal disorder. Currently, there is no cure for CJD and patients typically die within a year after symptoms begin.However, NIH officials in control of the collection's fate told UPI the remaining samples are of little scientific value and may be disposed of if researchers outside the agency do not claim it. That position stands in sharp contrast with CJD experts who thought the collection should be preserved."It's invaluable," said Dr. Paul Brown, former medical director of the NIH's Laboratory for Central Nervous System Studies, whose expertise is in CJD and mad cow disease (also known as bovine spongiform encephalopathy, or BSE).The collection is badly in need of organization and no one is certain how many brains or other tissue samples it contains, said Brown, who worked with the collection since its inception in the 1960's until his retirement last year. There could be brains, blood, spinal fluid and various other tissues from 1,000 people or more, he said. Some of the specimens would be of scientific use today, he said."This collection has the unique value of stretching back to the beginning of when these diseases were discovered," Brown told UPI, noting that the first samples were obtained in 1963. "It would be as though you had in your hands the possibility of finding out when AIDS started."Bruce Johnson, a former technician at the CNSS lab who worked extensively with the collection before he retired in 2003, told UPI he was told "in two years they (NIH officials) are going to destroy it, if nobody wants it."Eugene Major, acting director of the basic neuroscience program at the NIH, said no specific timeframe had been established."We have not set a firm deadline date," Major told UPI. "We are working very hard with investigators that we know in order to be able to make sure that whatever we deem is valuable is potentially kept here." Some samples already have been determined not to have any research value and have been "removed and disposed of," he said.Others samples have been given out to Dr. David Asher at the Food and Drug Administration and Pierluigi Gambetti at the National Prion Disease Pathology Surveillance Center in Cleveland, Ohio.Major maintained the remaining collection was not particularly valuable for research. "Whatever had been collected here that has not already been distributed to responsible investigators who could use them really has very little remaining value," he said.Neither Asher nor Gambetti returned phone calls from UPI, but Brown said he thought Asher had received only a dozen or two samples at most and Gambetti had not received much at all.Neil Cashman, a brain-disease researcher at the University of Toronto's Center for Research in Neurodegenerative Diseases -- who has tried to obtain the collection from the NIH -- said it was priceless."It would be like destroying an art museum," Cashman told UPI. "There's all this information and insight that's locked up in these tissues and if it's destroyed it will be lost forever."The Memorial Institute for Neurodegenerative Diseases Inc., a non-profit organization consisting of more than 40 university and institute researchers from the United States, Canada, United Kingdom and France, also thinks the brain collection is invaluable."It is the opinion of the Board of Directors ... of The MIND Inc., that the ... brain bank should not be broken up nor destroyed," said Harry E. Peery, MIND's executive director, in a letter to UPI. "We believe that this collection is of inestimable research value and should be kept intact."The institute, at the University of Saskatchewan in Saskatoon, applied for possession of the collection in early 2004, but received a letter from the NINDS indicating the fate of the collection had not yet been determined."We have heard nothing further since that time" and continue to be interested in acquiring the complete collection, Peery said.CJD belongs to a group of rare, brain-wasting disorders that are little understood, incurable and fatal. This includes mad cow disease in cows, chronic wasting disease in deer and elk. The most infamous of these illnesses in humans is variant CJD, which people can contract from eating beef products infected with the mad-cow pathogen.Although vCJD has infected more than 154 people worldwide, only one case has ever been detected in the United States -- in a Florida woman who is thought to have contracted the disease while living in the United Kingdom. However, the NIH brain samples have never been screened for vCJD -- something Johnson thinks is critically important."No one has ever looked to see if any American (in the collection) in the past had variant CJD," Johnson said. "You think it would be required that they do that. You think it would be a Congressional mandate that they test these brains: 'Let's see if we've got this disease in our country.'"Johnson noted at least one brain in the collection he personally had examined -- from a French woman collected in 1971 -- showed evidence of possible vCJD infection, but the sample needed further study to be sure.Other samples in the collection include the brains of patients who were only 16 years old when they were diagnosed with CJD. This would be unusual for sporadic CJD, because generally it strikes those over age 60. Variant CJD, on the other hand, typically occurs in patients in their 20s or younger."I thought it was absolutely vital (to test these brains)," Johnson said. "Maybe there's a dozen cases in there of variant CJD."Major disagreed. "There's really no reason to do that," he said. "The effort it would take to screen those samples ... would not give us any new insights into variant CJD beyond what it is we already know."Johnson said he was frustrated with the NIH administration's lack of interest in preserving the collection or testing for vCJD. "They don't understand," he said, "they honest-to-god don't understand what it's all about."Patient advocates also objected to the possible destruction of the brains.Terry Singeltary, whose mother died of a type of CJD called Heidenhain variant in 1997, said he is outraged and families of other CJD victims probably will be, too."A lot of these families went through a lot of heartache and a lot of trouble to get these brain samples to the NIH," Singeltary told UPI. "Now they're just going to discard them because they're not of scientific use? That's just asinine. That stuff is valuable information."Graham Steel, vice-chair of the Human BSE Foundation in the United Kingdom, told UPI, "The potential loss of such important tissue samples would be a massive blow for TSE (the group of diseases that includes CJD and BSE) research in the United States. This should not be allowed to happen."Singeltary noted there currently is no cure for these diseases. "If you don't have any answers yet, why would you throw these specimens away?" he asked.He added that more sensitive tests are just becoming available and could help determine the origin of some of the CJD cases. "We've all been sitting around waiting for more sensitive tests to get validated because we want answers," he said."You know, it must be an embarrassment," Johnson said. "Some Senator is going to eventually say 'What is NIH doing about mad cow disease?' And people are going to scratch their heads and say 'not much'." He added, "What's going to happen (is) one of these senators or their wife is going to develop spontaneous CJD one day and ... there's going to be hell raised and they're going to ask, 'Why isn't NIH working on this?'"--E-mail firstname.lastname@example.org://www.washtimes.com/upi-breaking/20050323-053919-8481r.htm
UNITED STATES SENATE
WASHINGTON, DC 20510-4305
Mr. Terry SingeltaryP.O. Box 42Bacliff, Texas 77518
Dear Mr. Singeltary:
In response to your recent request for my assistance, I have contacted the National Institutes ofHealth. I will write you again as soon as I receive a reply.
I appreciate having the opportunity to represent you in the United States Senate and to be ofservice in this matter.
United States Senator
UNITED STATES SENATE
WASHINGTON, DC 20510-4305
Mr. Terry SingeltaryP.O. Box 42Bacliff, Texas 77518
Dear Mr. Singeltary:
Enclosed is the reply I received from the Department of Health and Human Services in
response to my earlier inquiry on your behalf. I hope this will be useful to you.
I appreciate having the opportunity to represent you in the United States Senate.
Thank you for taking time to contact me.
United States Senate
DEPARTMENT OF HEALTH & HUMAN SERVICES
National Institutes of HealthNational Institute of NeurologicalDisorders and Stroke
Building 31, Room 8A52
31 Center Dr., MSC 2540
Bethesda, Maryland 20892-2540
May 10, 2005
The Honorable John CornynUnited States SenatorOccidental Tower5005 LBJ Freeway, Suite 1150Dallas, Texas 75244-6199
Dear Senator Cornyn:
Your letter to the National Institutes of Health (NIH) forwarding correspondence from Mr. Terry
S. Singeltary, Sr., has been forwarded to me for reply. Mr. Singeltary is concerned about thepreservation of Creutzfeldt-Jakob disease (CJD) brain samples that have been maintained by theNational Institute of Neurological Disorders and Stroke (NINDS) Intramural Research programfor many years.
I am sorry to learn that Mr. Singeltary's mother died of CJD and can certainly understand hisdesire that any tissues that could help investigators unravel the puzzle of this deadly disease arepreserved. I hope he will be pleased to learn that all the brains and other tissues with potential tohelp scientists learn about CJD are, and will continue to be, conserved. (The tissues that arediscarded are those that have either decayed to an extent that renders them no longer appropriatefor research or those for which we do not have sufficient identification.)
The purpose of gathering these brains and tissues is to help scientists learn about CJD. To that
end, some of the NINDS-held samples are distributed to investigators who can demonstrate thatthey have a compelling research or public health need for such materials. For example, sampleshave been transferred to NIH grantee Dr. Pierluigi Gambetti, who heads the National PrionDiseases Pathology Surveillance Center at Case Western Reserve University in Ohio and workswith the Centers for Disease Control and Prevention to monitor all cases of CJD in the UnitedStates. Dr. Gambetti studies the tissues to learn about the formation, physical and chemicalproperties, and pathogenic mechanisms of prion proteins, which are believed to be involved inthe cause of CJD. Samples have also been transferred to Dr. David Asher, at the U.S. Food andDrug Administration, for use in assessing a potential diagnostic test for CJD.
Page 2 - The Honorable John Cornyn
in closing, we know that donating organs and tissue from loved ones is a very difficult andpersonal choice that must often be made at the most stressful of times. We at the NINDS aregrateful to those stalwart family members who make this choice in the selfless hope that it willhelp others afflicted with CJD. We also know the invaluable contribution such donations maketo the advancement of medical science, and we are dedicated to the preservation of all of thetissue samples that can help in our efforts to overcome CJD.
I hope this information is helpful to you in responding to Mr. Singeltary.
Story C. Landis, Ph.D.
Director, National Institute ofNeurological Disorders and Stroke
THE concerns i wanted to mention are ;
A. The distribution of those tissue samples and how they are distributed.
I think more people researching this agent (especially sporadic CJD) should be
able to obtain the tissue samples. THE political crap below must stop, or what i
like to call BSeee ;
Major previously said, however, that efforts to inform researchers of the availability of the collection were already underway and included informing NIH grantees. He added he had personally notified researchers at scientific meetings, but no TSE researcher contacted by UPI was aware of this."I was never informed," said Laura Manuelidis, an expert on these diseases and section chief of surgery in the neuropathology department at Yale University. She said the first she had heard of the situation was in UPI's March 24 report. Manuelidis also said she contacted Major, expressing interest in the specimens, but so far has not received a response. "I sent a letter to (Major) on (March 25) about our interest in these specimens, but he has not replied," she told UPI in an e-mail.Neil Cashman, a TSE expert at the University of Toronto, who said he was not aware the samples might be destroyed, has lobbied colleagues at the University of British Columbia -- where Cashman is scheduled to move to this summer -- to help draft a letter requesting the collection.The Memorial Institute for Neurodegenerative Diseases Inc., a non-profit organization consisting of more than 40 university and institute researchers from the United States, Canada, the United Kingdom and France, requested the collection in January, 2004. So far, the institute has not been informed of a decision by the NIH.Asked if Major had told him whether the collection would be preserved, MIND Executive Director Harry Peery said, "We have heard nothing further from Eugene Major or anyone else at the NIH regarding the brain collection." http://washtimes.com/upi-breaking/20050407-110535-2570r.htm MORE FUNDING TO DR.Frank Bastian! The only funding he gets is from NIH, and they are on the verge of shuttinghim down. give him a bigger grant. believe me, all the answers to this agent are not answered yet, and many many humans and animals have been exposed, with more to follow. There is not enough money being funded/granted tothe research of human/animal TSE compared to other diseases and this will come back at us by many more dueto incubation period and everyone just ignoring it over the years, and there just might be more to this nightmare thana prion. ======================= Dr. Pierluigi Gambetti, who heads the National PrionDiseases Pathology Surveillance Center at Case Western Reserve University in Ohio and workswith the Centers for Disease Control and Prevention to monitor all cases of CJD in the UnitedStates. Dr. Gambetti studies the tissues to learn about the formation, physical and chemicalproperties, and pathogenic mechanisms of prion proteins, which are believed to be involved inthe cause of CJD. ======================= HOW CAN YOU monitor all cases of CJD when it is not reportable in every state of all age groups? WITH all the animal TSEs in the USA for over 2 decades rendered and fed back to each other for human and animalconsumption, with TSE in cattle that we know of in the USA and some others rendered without TSE test, how can allsporadic CJD in the USA be sporadic? I hate that word. its just an excuse or lie. FINALLY, a kind thank you to Dr. Landis et al at NINDS, and there 'confirmation letter' that our loved ones brain and tissues samples will be preserved and used for CJD research.ALSO, a kind tribute to the late Dr. Joe Gibbs whom we all miss and respected so much. HE would have been very upset if those brain and tissue samples would have been destroyed.
with kindest regards,
I am sincerely,
Terry S. Singeltary SR.
P.O. Box 42
Bacliff, Texas USA 77518
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