Showing posts with label HR 1362. Show all posts
Showing posts with label HR 1362. Show all posts

Tuesday, March 1, 2011

Call on Congress to Advocate for Parkinson's Disease

 Take a few minutes to support PD
It isn't often that we have an opportunity to do something important to help the Parkinson's disease cause. We know that people want to contribute.  Now there is an opportunity for you, your friends and family to add your voice in grassroots support of to Call on Congress.

On Wednesday, March 2, 2011 a few hundred advocates will be personally meeting with Senators and Members of House of Representatives to ask that they join the Congressional Caucus on Parkinson's disease, to Co-sponsor the National Neurological Diseases Surveilance System Act and to support biomedical research as well as therapy development at the National Institutes of Health. 

While Parkinson's disease may discriminate about whom to attack, PD knows no political party boundaries. Call on Congress is more than a way to add your voice to the rest of the Parkinson's disease community while approximately 250 PD advocates have personal meetings with members of Congress and their staff members to advocate for awareness of the disease and the significant issues about PD. Call on Congress lets your legislators know that there are many PD constituents out there.

All it takes is a simple statement to your Congressman/woman begins with a single phone call or email in support of the passage of the revised National MS and Parkinnson's Disease Registries Act  (HR 1362 and S 1273) now known as the National Neurological Diseases Surveillance System Act of 2011-2012 S.425.  It will be introduced by Co-sponsor Senator Mark Udall, son of the late Morris Udall.  As a matter of fact, PAN has already written the statement which you can edit to personalize or send as is.

USA coast to coast
One purpose of the bill is establish a national data surveillance system which can track and collect data on the epidemiology, incidence, prevalence, and other factors of neurological diseases, including Parkinson’s and MS. A primary goal is to be able to collect information from many sources in order to measure the incidence and prevalence of the disease. The implications of having accurate data and geographical information open doors to problem solving.

This afternoon we "attended" the Parkinson's Action Network webcast, Research Public Policy Forum. where the importance of Your/Our PD stories carries great weight not only with legislators but also the public. For the last several years we have begun to see the humanizing of a disease which for so many years was seen as a stereotype. We share our patient and caregiver back-stories with each other and now it is time to share a few lines with people who have the power to represent us.

Please remember to thank your legislator if you see your State represented.

Update:  As you know, the National Neurological Diseases Surveilance System Act of 2011-2012 S.425.IS was introduced by Senator Udall.  That does not mean it is a done deal. Continued public support is necessary. Follow the bill so that you can send the necessary reminders to your government officials.

"The bill will create, for the first time, separate, permanent, and coordinated MS and Parkinson's disease national registries at the Centers for Disease Control and Prevention (CDC).  The registries will rely upon existing databases including Medicare, Veterans Affairs, state registries, and other databases to determine the incidence and prevalence of MS and Parkinson's disease across America."

Thursday, September 16, 2010

Following the Latest Stem Cell Debate in D.C.

News from Parkinson's Action Network (PAN) 9-16-10

A few PD-related news updates

If you haven't read the 9/16/10 Parkinson's Action Network letter for the Senate Hearings on human embryonic stem cell research, here is a direct link to the hearings convened by Senator Tom Harkin.
What you will see is a video of the hearings convened to discuss the science not the legal entanglements or the preliminary injunction.

You can go to PAN to see the status of HR 1362 which is the National MS and Parkinson's Disease Registries Act.  From the same page you will find the link to contact your legistlators:  Help Make Stem Cell Research Legislation a Priority this Fall.  It is not too late to contact your Members of Congress to express your concern.

If you missed some of the Podcasts offered through the Michael J Fox Foundation, it isn't too late to download them.  We missed Dr Andrew Sngleton speaking on What Causes Parkinson'sDisease? so we'll be opening this download.  You can still find the Podcasts listed under News & Events.

Lonnie Ali's recent remarks at a conference sponsored by GSK for PD patients and caregivers made it clear that the support of family and loved ones is so important to getting an early diagnosis. They were married a year after his PD diagnosis but 5 years after his parkinsonian symptoms were dx'd.

What we learn is that everyone does their part.  If you can't be geographically close there is always email and the phone for quick contact.  Just reach out.

Sunday, February 21, 2010

The Time Has Come for A National Registry for Parkinson's Disease

Our Armchair Attendance at the 2010 Parkinson's Action Network (PAN) Forum 

A few days ago we signed in to "attend" the 16th annual PAN Research and Public Policy Forum in Sunnyvale, CA without having to venture into the midwest cold.  We stayed from beginning to end, no mean feat when one of us has PD.  We really like webcasts because they provide us with the ability to interact while not having to say "excuse me/pardon me" when it's time for a pit stop. 
Although we have written about some of the covered topics in recent months, we'd like to mention one very important issue: data analysis of neurodegenerative conditions because it is an area where we all can have a voice.  The Parkinson's Action Network is our advocacy voice but without our support in return, that voice will not be nearly as loud.
  • Important legislation is in committee and in order for the best interests of people with Parkinson's to be represented, it is important that your Congressmen and women and your Senators to be encouraged to co-sponsor HB-1362, the National MS and Parkinson's Disease Registries Act. The Senate equivalent bill is S-1273.
  • Without the statistics generated by such a registry, which will draw from a number of resources, target areas cannot be identified, the need for certain research dollars are hard to justify, better data for research and treatment can be delayed.  
  • Currently we do not have a accurate information regarding the incidence and prevalence of PD and other neirodegenerative diseases.  These statistics are necessary when planning programs and services, advocating, and focusing research for risk factors, genetics, environmental exposure, changes in incidence/prevalence/distribution.  Earlier studies did not have the higher proportion of older Americans in the mix and most certainly did not have the incidence figures for Young or Early Onset Parkinson's (YOPD). 
  • The National Registry will draw securely from a broad source of available information in order to compile the requisite information.  While there are two states which do have the records and provide good models, what is needed is a national picture.
  • To lend your support for HR-1362 you can click here to link to the PAN prepared letter site.
  • You will then prepare your email message 
  • Simply type in your zip code, the proper representatives' email address(es) will appear - depending on the district - you may have to add your home address.
  • Do not forget to enter your email address if you will be sending through the PAN system.  If you are mailing the letter, it may not be necessary
  • You can then use the letter template
  • ADD your personal story or message if possible because it carries more weight.
  • Write your additions to the letter in 5 minutes or less - okay, it might take longer but not that long - I just did mine. The system will indicate if your legislator has already co-sponsored the bill and will generate a thank you letter - be sure to send that
  • Otherwise send the request for co-sponsoring letter with your personal revisions or additions
  • To send a message to your senator requesting support for S.1273 - yes, separate letters are needed, click here.
I've sent mine and Steve will be sending his soon.  I hope that you will join us.
Just a reminder from the PAN forum, if you're written to your legislators before and they had responded positively, be sure to thank them. When you're bombarded by requests, problems and complaints, it is nice to read a kind word. 
We'll be back with more information from the forum.  But just in case you'd like to view it, you can do so by going to the Parkinson's Action Network website. I'm not sure if it is posted yet but if it doesn't, just bookmark it and return in a few days. 

To follow these both the Senate and the House bills
Senate Bill: S.1273 National MS and Parkinson's Disease Registries Act

The next webcast of  Parkinson's disease interest is from the Parkinson's Disease Foundation and this event will be held on Tuesday, February 23, 2010 at 1:00 pm EST.  The topic is Nutrition and Parkinson's Disease.
You can link to the PDF website for webcast access here.