But NETRP is in serious danger of losing its funding. Parkinson's Action Network has put out an alert. This funding helps everyone, not just for soldiers, it does some of the most innovative research like gene therapy and work in communication with FOX FOUNDATION and others - I cannot emphasize how important it is to write your legislators about this immediately and urge them not to cut this research program.

Go here to information and samples for your representatives.
http://www.parkinsonsaction.org/content/view/113/204/

or I can email you a copy of what you need. This is very important to everyone here at BT2.

paula

Is this possibly another victim of the American war machine. After all, the money to fund the efforts in the middle east has to be found in whatever corner the nickles and dimes can be gleaned from. $49m is just loose change I realize, but there's that old adage "every penny counts". ...just wondering out loud.

Stricken Retired General Takes The High Ground

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Stricken Retired General Takes The High Ground
Diagnosed With Lou Gehrig's Disease, Mikolajcik Decides To Make A Difference

By Special To The Day


Published on 9/9/2006 in Region » Region News


by U.S. Force

• President George H.W. Bush, left, with Brig. Gen. Thomas Mikolajcik during a visit to Somalia in January 1993.



When retired Air Force Brig. Gen. Thomas Mikolajcik, 60, a Norwich native, was diagnosed with amyotrophic lateral sclerosis in 2003, he made a decision.
“You can sit back and say, 'Why me?' or you can say, 'What can I do to help other people and make a difference?' ” Mikolajcik said this week in a telephone interview from his home in South Carolina.

Mikolajcik decided to raise awareness about the illness, commonly referred to as Lou Gehrig's disease, which he learned would attack his nerve cells and the pathways in his brain and spinal cord, eventually paralyzing him.

There is no cure for the disease. His doctor predicted he would die in less than three years.

Now, three years later, he is in a wheelchair and needs his grandchildren to turn the pages of the book when he reads to them, but he has helped establish a South Carolina chapter of The ALS Association, helped open the first ALS clinic in the state, and brought attention to the higher risk of ALS for men who have served in the military.

“We're moving at the speed of light, not the speed of bureaucracy,” he said.

Mikolajcik was born at The William W. Backus Hospital in Norwich on Aug. 17, 1946, during a thunderstorm. “I came in with a bang,” he said.

He attended Greeneville Elementary School and graduated from Norwich Free Academy in 1964. He was designated Norwich Native Son in 1993.

The retired general, whose final assignment before retiring in 1996 was as director of transportation for the Air Force at the Pentagon, has been using his connections in Washington to raise awareness about the disease.

In meetings with members of Congress and Department of Defense officials, Mikolajcik has cited studies that show that people who have served in the military appear to be more likely to later suffer from ALS.

According to a report published by The ALS Association last May, men with a history of military service have a nearly 60 percent greater risk of contracting ALS than men who didn't serve in the military. Other studies, including some conducted by the Defense and Veterans Affairs departments, have come to similar conclusions, the association said.

“It's imperative that the government take a lead role because there's a direct correlation between military service and ALS,” Mikolajcik said.

The association estimates that about 30,000 people in the United States have ALS. Mikolajcik wants the government to choose one agency to take a lead role in consolidating research funds, because the relatively small number of people with the disease doesn't attract research by pharmaceutical companies, he said.

His efforts appear to be paying off.

In May, Mikolajcik met with William Winkenwerder Jr., assistant secretary of defense for health affairs. As a result, officials from the Department of Veterans Affairs and the National Institutes of Health are planning a comprehensive workshop on ALS this fall, Mikolajcik said.

He has also been advocating for ALS patients in South Carolina. At the time of his own diagnosis, he was surprised by how little support patients were offered.

It was like “diagnose and adios,” Mikolajcik recalled.

Rebecca Jordan, executive director of The ALS Association, South Carolina Chapter, said Mikolajcik inspires other ALS patients.

“Now they feel that they're not alone,” she said. One family that visited the clinic walked in with newspaper clippings about Mikolajcik, Jordan said.

Mikolajcik's daughter, Christina Robertson, 32, said the success came so quickly because her father doesn't take no for an answer.

While the disease has attacked many of Mikolajcik's motor functions, his voice remains clear and strong, and he has used it to make speeches at the Medical University of South Carolina and at Rotary Clubs.

Mikolajcik's mother, Teofila Mikolajcik, 85, still lives in the Prospect Street home in Norwich where her son grew up. She said she talks to him every day.

“He has a wonderful attitude,” she said. “It helps me a lot.”

Her son said the values he acquired in his hometown have stayed with him all his life.

“I look back on my years in Norwich with great love and appreciation,” he said. “How many people get to go to a high school that's like a college?”

After graduating from the Air Force Academy in 1969, Mikolajcik began his 27-year career in the Air Force. He flew missions in Vietnam and commanded a C-130 transport wing at the Rhein-Main air base in Germany during the first Persian Gulf War. He also commanded all air operations in Somalia between December 1992 and April 1993, and was the wing commander of the Charleston Air Force Base from 1991 to 1994 as a C-17 unit was brought there.

After finishing his career at the Pentagon, he and his wife, Carmen, retired to Charleston.

Mikolajcik said he chooses to focus on the things he can do. He said he can still go out in his motorized wheelchair and “terrorize the neighborhood,” and he still goes out to restaurants, even though he needs help eating and has to drink his wine through a straw.

“If people look at me funny, then that's their problem, not mine,” he said.

Despite the impediments brought on by the disease, Mikolajcik said he still lives by a creed he acquired in the military: “You lead, you follow, or you get out of the way.”

unsure if i posted this on the old brain talk, so forgive me if it is a repeat:
Northwestern University
Variations in detoxifying genes linked to Lou Gehrig's disease
Genetic variations in three enzymes that detoxify insecticides and
nerve gas agents as well as metabolize cholesterol-lowering statin
drugs may be a risk factor for developing sporadic amyotrophic lateral
sclerosis (ALS, or Lou Gehrig's disease), and possibly responsible for
a reported twofold increased risk of ALS in Gulf War veterans.


These findings, from a study led Teepu Siddique, M.D., and colleagues
at Northwestern University, open the door to investigating
gene-environment interactions as a cause of ALS and other illnesses and


to the development of molecular targets for specific treatments. The
study was published in the August 22 online issue (available now) of
the journal Neurology.


Siddique is Les Turner ALS Foundation/Herbert C. Wenske Professor,
Davee Department of Neurology and Clinical Neurosciences, professor of
cell and molecular biology and director of the Neuromuscular Disorders
Program at Northwestern University Feinberg School of Medicine.


ALS is a complex neurodegenerative disorder of the motor neurons that
results in muscle weakness, difficulty speaking, swallowing and
breathing and eventual total paralysis and death generally within five
years.


In 1993 Siddique and collaborators determined that mutations in a gene
known as SOD1 account for 20 percent of familial, or inherited, ALS (2
percent of all cases of ALS). However, the cause of sporadic ALS is
still unknown.


In earlier research Siddique and other researchers hypothesized that
sporadic ALS is modulated by variations in multiple genes interacting
with each other and environmental exposures.


The genes for human paraoxanases (PON 1, PON 2 and PON 3), which are
located on chromosome 7q21.3, code for the production of detoxifying
enzymes involved in the metabolism of a variety of drugs,
organophosphate insecticides, such as parathion, diazinon and
chlorpyrifos, and nerve gas agents such as sarin.


Previous research described a possible twofold increased risk for
developing ALS in veterans of the Gulf War, indicating a war-related
environmental exposure to organophosphates and sarin in genetically
susceptible individuals as a possible cause. PON gene cluster variants
have previously been associated with other neurodegenerative and
vascular disorders, including Alzheimer's disease, Parkinson's disease,


coronary artery disease and stroke.


Although the Northwestern DNA study samples were not analyzed for
inclusion of Gulf War veterans, Siddique and co-researchers found
significant evidence that gene variations (polymorphisms) on the
chromosome region encompassing PON2-PON3 were strongly associated with
sporadic ALS.


"Thus, single nucleotide polymorphism genotyping in the intergenic
regions of the PON gene cluster, and replication, gene expression,
gene-gene interaction and PON serum/enzymatic studies may help
elucidate the complexity of PON cluster association with ALS," Siddique


said.


Siddique hopes to study DNA samples from Gulf War veterans with
increased incidence of sporadic ALS and has applied for their DNA from
the Veterans Administration collection.


http://www.eurekalert.org/pub_releas...-vid070506.php

Vegetative patient 'communicates'

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Vegetative patient 'communicates'

The healthy brain (l) showed the same activity as the patient's (r)
A patient in a vegetative state can communicate just through using her thoughts, according to research.
A UK/Belgium team studied a 23-year-old woman who had suffered a severe brain injury in a road accident, which left her apparently unable to communicate.

By scanning her brain, they discovered she could understand spoken commands and even imagine playing tennis.

They said their findings, published in Science, were "startling", but cautioned this could be a one-off case.

Five months after her accident, which happened in July 2005, the researchers used functional magnetic resonance imaging (FMRI) to record the woman's brain activity.

We have found a way to show that a patient is aware

Dr Adrian Owen, MRC

She was diagnosed as being in a vegetative state, which meant even when she was awake, she was unresponsive.

While her brain was being mapped, the researchers asked her to imagine simple tasks, such as walking around her home and playing tennis.

Lead scientist Dr Adrian Owen, a neuroscientist from the Medical Research Council's Cognition and Brain Sciences Unit in Cambridge, said: "The tasks we chose are based on many years of brain imaging research that shows different areas of the brain are activated when we perform different kinds of tasks."

'Indistinguishable'

When the scientists compared her brain activity to that of healthy patients, who had been asked to carry out the same task, they discovered the patterns were "indistinguishable".

Dr Owen said: "These are startling results.


I can remember when I couldn't respond and it was so scary



Kate Bainbridge's story

"It tells us the patient could understand speech, because of course, we asked her to do these things. It also tells us that she is able to perform simple tasks in her head, such as imagining certain scenarios.

"We see this as a proof of principle: we have found a way to show that a patient is aware when existing clinical methods have been unable to provide that information."

However, he emphasised that this was a single case and people should not assume all patients in a vegetative state were consciously aware.

He said: "All vegetative patients are different: they have damage to different parts of their brains and their chances of recovery are different."

Fuelling the debate


In an accompanying article in the same journal, Lionel Naccache, of the Cognitive Neuroimaging Unit in France, said: "Despite the woman's very poor behavioural status, the FMRI findings indicate this existence of a rich mental life."

He said there was a strong case for assessing other patients using this scanning technique, but he added that it was important not to generalise from one patient.

The finding that vegetative patients may experience awareness of their surroundings will fuel the ethical and legal arguments that surround some vegetative state cases.

Last year, a debate raged in America over whether 40-year-old persistent vegetative state patient Terri Schiavo should be allowed to live or die.

Eventually, following a court decision, her feeding tube was removed on 18 March and she died 13 days later.

Kate Bainbridge, who was initially diagnosed as being in a vegetative state, but who has since recovered and can communicate through a keyboard, said the scanning work was very important. She took part in some scanning experiments from the same team.

She said: "I can remember when I couldn't respond and it was so scary."

She added that doctors should never assume that a patient is not aware.


http://news.bbc.co.uk/2/hi/health/5320234.stm
__________________

The following is an important and urgent message from Mary Richards, PAN Director of Government Relations. I hope you can take the next 5-10 minutes to read the information and act on behalf of the PD community at this critical time. Thank you for your attention and your help!!!


I need the help of our grassroots leaders to make an even harder push to protect NETRP Parkinson’s research funding! We need to send our strongest message that NETRP is important to the Parkinson’s community by getting as many Members of Congress as possible on our NETRP Dear Colleague. Unfortunately, right now, we only have 12 House signers (in addition to our five Co-Chairs.)

The letter has been open for two weeks and Congress has only been back in Washington for a few days, but the Defense Conference Committee may begin deciding NETRP’s fate by the end of next week. We need many, many more Congressional signers for this letter to have the weight and importance needed to protect the program during the Conference Committee.

You might remember that last year’s number of House Dear Colleague signers was well above 70. This year’s earlier Dear Colleague was only signed by 41 Members, so we need to redouble our efforts to make sure that it does not appear that our support is dwindling. I am happy to report that several hundred action alerts have been sent to Hill offices, and we will send out another action alert to encourage more people to take action and others to follow-up.

In the meantime, it would be very helpful if the State and Congressional Coordinators could make sure to send those action alerts AND please call their delegation’s health Legislative Assistants (if anyone has lost those business cards, they can look up their Member on capwiz by last name and then click the “Staff Members” button for the health LA’s names and phone numbers. http://capwiz.com/pan/dbq/officials/)

I am attaching the House Dear Colleague letter in case folks are interested. More information is also included in the action alert on the website and under the legislative impact tab on the website.

We know how important this program is to our community. I recently had another conversation with our friends at the Fox Foundation about the impact this program has on Parkinson’s research and they again affirmed that NETRP funds the most innovative research that will exponentially grow our knowledge of Parkinson’s disease and how to better treat and cure it. Let’s do everything we can to protect this program.

Thanks!
Mary M. Richards
Director of Government Relations
Parkinson's Action Network
phone 202.638.4101 ext103


DEAR COLLEAGUE LETTER next post

Dear Colleague:

We invite you to join us in signing a letter to the House/Senate Defense Appropriations Subcommittee requesting that they provide at least the House level of funding, $26.5 million, in Conference on the Fiscal 2007 Defense Appropriations bill for the Neurotoxin Exposure Treatment Research Program (NETRP). This program is funded in the U.S. Army Military Operational Medicine Research Program under the U.S. Army Medical Research and Materiel Command.

This letter also confirms Congressional intent and the purpose of the NETRP program, which since Fiscal 1997 has been to study neurodegenerative mechanisms and treatments with a special emphasis on Parkinson's disease. NETRP was originally added to the Fiscal 1997 Defense Appropriations bill at the request of Congressman Joseph McDade (R-PA), who at the time had been diagnosed with Parkinson's disease. The Congressional Caucus and Working Group on Parkinson's Disease continues this effort by working every year to include funding for this innovative Parkinson's research program to the DoD Appropriations bills.

In fact the NETRP is strongly supported by the entire Parkinson's patient community, including the Parkinson's Action Network, The Michael J. Fox Foundation for Parkinson's Research, Parkinson's Disease Foundation, National Parkinson Foundation, Parkinson Alliance, and American Parkinson Disease Association.

NETRP research improves military readiness. American troops are routinely exposed to a wide range of chemicals and neurotoxins that may increase the risk of developing neurodegenerative conditions, particularly Parkinson's disease. Understanding how exposures occur, the incidence of disease afterwards, and how these conditions may be effectively treated, cured, or prevented allow the Department of Defense (DoD) to better protect military personnel, minimize the risk of future exposures, and improve the readiness of American military forces.
I In addition to helping military personnel, NETRP research breakthroughs also benefit the more than one million Americans with Parkinson's disease, including 42,000 veterans and 60,000 newly diagnosed Americans each year.
For these reasons, we ask you to please join us in supporting our armed service members and the more than one million Americans with Parkinson's disease by signing onto the attached letter. If you would like more information, or to sign on, please have your staff contact Orly Isaacson with Rep. Maloney at x5-7944 or Eben Carle with Rep. Boehlert at x5-3665.

Sincerely,


LANE EVANS FRED UPTON CAROLYN B. MALONEY
Member of Congress Member of Congress Member of Congress

MARK UDALL SHERWOOD BOEHLERT
Member of Congress Member of Congress

Current signers:
Rep. Carolyn B. Maloney
Rep. Lane Evans
Rep. Fred Upton
Rep. Sherwood Boehlert
Rep. Mark Udall
Rep. Sherrod Brown
Rep. Ellen Tauscher
Rep. Michael R. McNulty
Rep. Donald Payne
Rep. Robert Wexler
Rep. Tom Davis
Rep. Jan Schakowsky
Rep. Jerrold Nadler
Rep. Neil Abercrombie
Rep. Henry Waxman
Rep. Maurice Hinchey
Rep. Jim McDermott


September XX, 2006




The Honorable C.W. Bill Young The Honorable John P. Murtha
Chairman Ranking Member
Subcommittee on Defense Subcommittee on Defense
House Committee on Appropriations House Committee on Appropriations
The Capitol, Room H-149 The Capitol, Room H-149
Washington, DC 20515 Washington, DC 20515

Dear Chairman Young and Ranking Member Murtha:

We respectfully write to request your continued support for providing at least the House level of funding, $26.5 million, in Conference on the Fiscal 2007 Defense Appropriations bill for the Neurotoxin Exposure Treatment Research Program (NETRP). This program is funded in the U.S. Army Military Operational Medicine Research Program under the U.S. Army Medical Research and Materiel Command.

Furthermore, we request your support in preserving the original intent of the NETRP program, which since Fiscal 1997 has been to study neurodegenerative mechanisms and treatments with a special emphasis on Parkinson's disease. Congress has consistently emphasized the Parkinson's focus of the NETRP program beginning with the program's inception and continuing with the leadership of the Congressional Caucus and Working Group on Parkinson's Disease. Congressional intent has been carried out by the U.S. Army Medical Research and Materiel Command, which is responsible for implementing the program. The program's focus has historically been on "DOD sponsored Parkinson's-related research" and we have always supported the program because of that focus. We urge you not to redirect the program in any way.
As you are aware, American troops are routinely exposed to a wide range of chemicals, low-level radiation, and other external stressors and toxins such as radar, sonar, lasers, pesticides, herbicides, and head injury. Scientists believe these exposures increase the risk of developing neurodegenerative conditions, particularly Parkinson's disease. These conditions negatively impact the readiness of American military forces since they all result in the permanent loss of brain and nerve cells.
Thus, the NETRP was established to investigate the causes, diagnosis, and treatments of Parkinson's and other neurodegenerative diseases to improve military readiness. At a time when additional pressure is placed on the warfighter, NETRP funded research is working to prevent and discover better treatments and a cure for Parkinson's disease and other neurodegenerative disorders. Understanding how exposures occur, the incidence of disease afterwards, and how these conditions may be effectively treated, cured, or prevented will allow the Department of Defense (DoD) to better protect military personnel and minimize the risk of future exposures. The scientific findings from biomedical research conducted through the NETRP may provide DoD with innovations in materiel design, avoidance protocols for unnecessary exposures, and neuroprotective drugs to prevent damage in the first place. Furthermore, the early detection of nerve cell loss caused by such toxic exposures may provide DoD with better methods of evaluating warfighter performance and faster ways of detecting potential impairments.
Although there are direct military applications for the research funded by the NETRP, the military is not the only recipient of the benefits of the NETRP. Any research breakthroughs in prevention, detection, and treatment of neurodegenerative conditions are immediately applicable to civilians -- particularly the more than one million Americans with Parkinson's disease, including 42,000 veterans and 60,000 newly diagnosed Americans each year.
For these reasons, we respectfully urge you to provide the DoD peer-reviewed NETRP with at least the House level of $26.5 million in the Fiscal 2007 Defense Appropriations bill.

Sincerely,