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)
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