Living in America. Wanting a cure? Wanting better therapies? Want a replacment for Sinemet, which is 40 years old an still our "gold standard" causing some of us horrible side effects such as Dykinesia?

There are many ways to get your voice heard. Having a debate on this issue is a great way for all of use in America to hear exactly (hopefully) what the candidates plans are for OUR FUTURES in healthcare!

TAKE ACTION NOW!!
If we don't do it...who will. We can't sit and say well others are working on such and such, I don't need to be involved. WRONG! The more voices the more gets done.

For example, on "hill day" during the PAN Forum in early February we desended upon The Hill 300 plus. By the end of the day many of the requests we had about signing Dear Callegue letters had been heard. It is amazing to see the power of a few voices and pleas being heard.

Science Debate 2008

Help Make Parkinson's Disease an Issue

Research!America, of which the Parkinson’s Action Network is a member, recently endorsed Science Debate 2008 and is calling for a presidential candidate debate focused on health, science, technology, and environmental policy. PAN strongly supports this debate on science and we urge the candidates to share their views on research, innovation, and improving health care, including hastening discovery of better treatments and a cure for Parkinson’s disease.

You can make a difference by telling the presidential candidates to participate in the only debate focused, in part, on biomedical research. For more information about Science Debate 2008, please read the statement below.


Today, Research!America endorsed Science Debate 2008, joining the call for a presidential debate on health, science, technology and environmental policy. Our statement is available below, on http://www.researchamerica.org/ or at www.sciencedebate2008.com/www/index.php?id=24.

Help make research a priority in the election by adding your support for this important initiative and urging the presidential candidates to commit to participating in the debate. Contact invited candidates Hillary Clinton, Mike Huckabee, John McCain, and Barack Obama today!
Research!America Backs Call for Presidential Debate on Science

WASHINGTON--Feb. 20, 2008--Research!America has signed on to Science Debate 2008, an initiative calling for a public debate in which the U.S. presidential candidates share their views on health, science, technology and environmental policy. The initiative is cosponsored by the American Association for the Advancement of Science and supported by a growing number of concerned scientists, journalists, government leaders, and more than 100 universities and other organizations. For a list of supporters, visit www.sciencedebate2008.com.

"Research!America supports Science Debate 2008 and the call to put health and scientific research on the agenda of the candidates for the presidency," said Research!America's chair, The Honorable John Edward Porter, the former Illinois Congressman. "A date of April 18 has been set for the debate, just before the Pennsylvania primary, but as yet no candidates have agreed to participate. We urge others to join us in calling on the candidates to take part in this crucial debate on no less than the future of our nation.

"Health and scientific research saves lives, finds ways to control health care costs, fuels our economic growth and ensures that the U.S. will continue to lead in scientific breakthroughs. Yet, federal research spending has seen real decreases five years in a row-and the president's latest budget proposal would make it six.

"As much as medical research has accomplished, we don't want to provide the same health care next year that we have today," he added. "The only way it will get better is to make it smarter. The only way to make it smarter is by putting research to work at the full level of scientific opportunity. The American public deserves no less."

According to a recent poll commissioned by Research!America, 82% of Americans are more likely to vote for a presidential candidate who supports increased federal funding for research to improve health. Similarly, 79% say the U.S. is losing its global competitive edge in science, technology and innovation.

Research!America is the nation's largest not-for-profit public education and advocacy alliance working to make research to improve health a higher national priority. Founded in 1989, Research!America is supported by more than 500 member organizations that represent the voices of 125 million Americans. Visit www.researchamerica.org.



Signing up for PAN Action Alerts is easy. And sending Alert letters/emails to your legislature couldn't be more simple than the way PAN has configured it. You add your story where directed, click send and PAN "mails" the email or letter FOR YOU. No postage stamps, No envelopes!

NETRP funding was one of our biggest "asks" on Hill Day. If you care to read them, at the bottom of this post are links to the Dear Collegue letters on this topic. You will see that funding under the current administration is lacking!

If you have personal quesitons about WHY anything PAN does is important, I encourage you to email Jennifer Sheridan, Program Manager. It may take a day or two for her to reply, but she will. If not, please let me know and I will aide in getting a reply for you.
JSheridan@parkinsonsaction.org

Recently I took action on a PAN Action Alert that was sent to my Senators and Congressman who has not yet signed this Dear Collegue letter (and PAN also figures this out for you!). In the section where PAN puts [your story here] I said:

"This program is important to me because I am a Parkinson's disease patient of 22 years. I am also a mother and grandmother. The success of NETRP can aid me in resting assured that my grandchildren and great grandchildren will have no need to fear a diagnosis of Parkinson's disease. Parkinson's is a relentless demon which takes the words "quality of life" out of my life completely.

"While many new thearpies to help those of us with Parkinson's disease have come through the Pipeline in the past 10 or so years, the fact that the "gold standard" therapy for Parkinson's disease is 40-years old is very sad. This "good standard" is Sinemet, which causes several terrible and disilitating side effects. But we must take the therapy regardless of the side effects. Something must be done to provide a new "gold standard", if not a cure for this disease. The NETRP program is one fo the best programs for Parkinson's disease. How awesome it would be to know that those potential patients that are yet to be diagnosed could never have to travel this road...well, that is imaginable and doable!

"Not only are NETRP and the Department of Defense working for the general public, but for my son who is still in Iraq. I can only hope and pray that he comes home safe and does not have need for the work the the NETRP program is performing, but if he does then I know that he should be in good hands.

"I do my part by committing to clinical trials in an effort to further new therapies through the Pipelne. I am currently a participant in an experimental gene therapy trial, involving brain surgery. I hope you will do your part by signing on to the House Dear Colleague."

Add YOUR voice. You don't have to "join" PAN, just take part in Action Alerts.

I hope I have not bee too much "in your face" with Action Alerts, if so, I do apologize, but they are the only way that PWPs are being heard on The Hill. PAN is the ONLY legislative voice the PD community has. They work had daily to make sure the power of OUR voices are heard.

Parkinson’s Research at the Department of Defense
Neurotoxin Exposure Treatment Research Program (NETRP)

Brief Summary

Established in 1997, the U.S. Army Neurotoxin Exposure Treatment Research Parkinson's (NETRP) program is a national granting program that aims to improve the treatment of Parkinson's disease, as well as to identify the cause of the disease and prevent it.

NETRP program funded research examines service members' exposure to toxins during military service, and ultimately, how these conditions may be effectively prevented, treated, and cured. Particularly during a time of war, NETRP research provides the Department of Defense (DoD) with information on how best to protect military personnel and minimize or eliminate future exposures to toxic substances, head injury, or other known contributors to Parkinson's disease.

The NETRP program is the only Parkinson's-specific Federal granting program, which is of significance to the more than one million Americans with Parkinson's disease, including nearly 80,000 veterans, and the 60,000 people diagnosed each year. The effort to fund this program is led each year, since 1997, by the Bicameral Congressional Caucus on Parkinson's Disease and supported by the entire Parkinson's community.

Due to its unique mission, NETRP funds bright researchers who are pursuing innovative and creative processes to reach better treatments and an answer to the plaguing question, "What causes Parkinson's disease?" This type of research is of incredible importance to the Parkinson's community since it involves novel concepts and approaches to finding new treatments and a cure.

This program is also unique because it is a national peer-reviewed granting program for which all grants must have a direct warfighter connection. As such, the NETRP program is truly a Department of Defense (DoD) research program.

The results of this research provide the DoD with information on how best to protect military personnel and minimize or eliminate future exposures to toxic substances or harmful situations. Soldiers and sailors are routinely put in harm's way during both active duty and National Guard training, including daily exposures to toxic chemicals, such as pesticides, low level radiation, sonar and radar, as well as placed at risk of head and other bodily injuries. Scientific studies have found that these everyday exposures and risk of injury put our troops at an increased risk for developing neurodegenerative diseases, such as Parkinson's disease, which causes permanent loss of brain and nerve cells. These actions in turn affect the overall readiness of our forces.

Furthermore, given the impending retirement of the baby boomers at the end of this decade, neurodegenerative diseases are expected to surpass cancer as the second leading cause of death among the elderly by 2040. When funds are invested, the return is dramatic—both lives and money are saved.

PAN Advocacy
Congressman Joe McDade (R-PA) created NETRP as a Congressional add-on program, which means it is not included in the President's budget. As a result, it has been up to Parkinson's advocates to fight for the program's continued funding each year.

Again this year, PAN advocates are asking their Members of Congress to sign on to a letter of support, known as a Dear Colleague, for the NETRP program. Our Congressional friends, the Parkinson's Caucus co-chairs, are circulating the NETRP program Dear Colleague, which is the primary way that Members show support for this essential program. House Co-chairs Peter King, Carolyn Maloney, Mark Udall, and Fred Upton and Senate Co-chairs Gordon Smith and Debbie Stabenow have been instrumental in securing Congressional support.

The Dear Colleague requests $55 million in Fiscal Year 2009 funding for the program. This funding may lead to exciting discoveries benefiting not only the military but the entire Parkinson's community. This is not an expansion of the program; rather it is the funding the NETRP program needs to fulfill its mission by funding critical research.


The program was funded at its highest level in Fiscal Year 2007 at $26.5 million. Unfortunately, the program was cut by $6.5 million in fiscal Year 2008, which means the current funding level is $20 million. All Defense health research programs that were not included in the Senate bill last year sustained a similar cut, so this year we are making an additional push for the program to be funded, for the first time, in the Senate bill.

Links
NETRP Dear Colleagues and letters currently collecting signatures

House NETRP Letter
Senate NETRP Letter

NETRP website, with more information on specific grants and research conducted

Let science be the winner on the day. Forty years without any advance on what we take today re medication. That's a shocker.

my rep's health assistant, whom I have gotten to know and like [not to be confused with the rep - Dave Weldon. R Fl - asked why they should have to fund NETRP, when the NIH has 26 agencies and tons of money. Not hiding the implication that the agencies are mismanaged and zerhouni really doesn't have that much control.

He has a point, and it was a fair question. I acknowledged that if that were true I was learning something. Then of course afterward you think about it and what you might have said.

I would have distinguished the military as being completely separate, if for no other reason, the majority of us get PD from environment/genetics, whereas they are in a magnified environment on all counts and we here at home don't tend to get PD from having a bomb go off beside our heads, blowing someone into pieces. Too sleepy to correct grammar.

This is important research, PD specific, and up to us to keep shouting for higher dollar amounts and even renewal at all every single year.

Amen
paula