Thursday, March 11, 2010

Attention for Young Onset Parkinson's Disease

There isn't nearly enough discussion of early or young onset PD

Young Onset Parkinson Conference

National Parkinsons Foundation-NPF and the American Parkinson Disease Association, Inc are co-sponsoring the 2nd
Joint Young Onset Parkinson Disease Conference in Sacremento, California. We are all fortunate to be able to join part of the conference from the comfort of our homes on Saturday, March 13, 2010 - 9:00am to 1:15pm Pacific Time and noon to 4:15pm Eastern Standard Time.

All you need to do is to register at the APDA website and tune in at your equivalent time zone start time. Or you can select the sessions you wish to see and join then. So click on the link to go to the American Parkinson Disease Association (APDA) to register for the webcast
Below is the Saturday, March 13th Webcast Agenda
The webcast agenda begins at 9:00 am pacific standard time for us we:ll join at Noon EST

9:00-10:15 am
The Electric Brain: Tailoring DBS Therapy for Parkinson’s Disease Patients
Michael S. Okun, MD
10:45 - 12:00
Complementary Therapies: Expanding your Symptom Management Options
Melanie M Brandabur, MD, MDS
1:30 - 2:45 pm
Update on Gene Therapies for Parkinson’s Disease
Michael J. Aminoff, MD, DSc, FRCP
3:00 pm - 4:15 pm
Parkinson's Disease Treatment: Is Exercise Really Medicine?
Jay Alberts, PhD
We've watched several short videos by Dr Alberts and we're really excited about the chance to hear a longer discussion. It is possible that in addition to the benefits of exercise and specifically of Forced Exercise which has been shown to reduce symptom severity and reduce reliance on medication for up to 4 weeks after cessation, there may be a benefit for neurogenic orthostatic hypotension. We're only speculating on the last but we're hoping to hear that on Saturday.
From Parkinson's Action Network (PAN)

NETPR - Neurotoxin Exposure Treatment Parkinson's Research program received $2.5 million for fiscal year 2010 in the Department of Defense Apropriation bill. This funding is an add- on each year which means that every year an effort must be extended to have it included.
The 2/17/10 16 Annual Research and Public Policy Forum has been archived but is difficult to locate at the PAN website. It is worth watching in segments, however. And as soon as we figure out how to open it, we'll let you know. If you find it first, please let us know.
Friday, March 26th 2010 is the deadline to ask your Senator to support NETPR.
Last week after the PAN webcast we wrote about the need for everyone to do their part to develop a Registry database for PD and MS that can drawn from current sources. Everyone benefits.. From the Parkinson's Action Network comes the update on the support for the National MS and Parkinson's Disease Registry.
The Importance of Advocacy
If you need a better understanding of what it is the PAN really does and why it is so important, watch the PAN Advocacy video
Because there are few groups for a sister disease, MSA, and less research, we thought that we should mention this news From Facebook:
Although unofficial, Miracles for MSA (Multiple System Atrophy) has asked that we observe March as MSA month. Since some people have probably been misdiagnosed with Parkinson's disease with a rapid progression when in fact they may very well have MSA, it is only fitting that we should respect and honor that wish.
I'm sorry to say that there is still no news on the Neupro Rotigotine Transdermal Patch horizon. We'll post as soon as there is some positive news about its return to the US. There are Canadian sites where it can be ordered. We've done a bit of shopping online and the prices are high. We're working on that article and will try to get it posted in a few days.
For those who are experiencing Neurogenic Orthostatic Hypostension as a symptom of PD or medications or MSA as a result of deficient release of norepinephrine, Droxidopa from Chelsea Therapeutics while available in Japan is still in Phase III clinical trials. We have learned that for MSA patients it can be made available on an emergency hardship basis through your physician.
We'll be writing more as it is closer to being approved by the FDA.

We're enjoying the pseudo March Spring before the next onslaught of midwest snow.

The dogs waited patiently for hours below a tree for the squirrels to come down to play. No fools, the squirrels did not descend to that level.

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