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Welcome to Our Parkinson's Place


I copy news articles pertaining to research, news and information for Parkinson's disease, Dementia, the Brain, Depression and Parkinson's with Dystonia. I also post about Fundraising for Parkinson's disease and events. I try to be up-to-date as possible. I have Parkinson's
diseases as well and thought it would be nice to have a place where
updated news is in one place. That is why I began this blog.
I am not responsible for it's contents, I am just a copier of information searched on the computer. Please understand the copies are just that, copies and at times, I am unable to enlarge the wording or keep it uniformed as I wish. This is for you to read and to always keep an open mind.
Please discuss this with your doctor, should you have any questions, or concerns. Never do anything without talking to your doctor. I do not make any money from this website. I volunteer my time to help all of us to be informed. Please no advertisers. This is a free site for all.
Thank you.


Saturday, April 19, 2014

NDI Medical launches spinoff to optimize deep brain stimulation for Parkinson’s disease


Photo from St. Jude Medical
In the decade since the FDA cleared the first deep brain stimulation device to treat symptoms of Parkinson’s disease (Medtronic’s Activa), it’s become established a safe, effective option along the spectrum of care. But Geoff Thrope, the founder and managing director of venture and commercialization firm NDI Medical LLC, said that technology hasn’t changed much since it first came out.
Now, as other companies advance me-too deep brain stimulation devices in the U.S. and bring them to market in other countries (read: St. Jude Medical and Boston Scientific), there’s a market opportunity for technology that can make the newer devices different and better.
NDI has spun off a new portfolio company, Deep Brain Innovations, to do just that. CEO Thrope said NDI has been working with Warren Grill, a professor of biomedical engineering at Duke University, over the past several years to identify needs of clinicians that weren’t being met by existing DBS technology. Thrope said they saw two big opportunities: making the devices more efficient, so that their batteries would last longer, and improving their performance.

Grill – also the company’s chief scientific officer – has developed a fourth dimension, enabling clinicians to control what he calls the temporal pattern of stimulation, or the pattern of time between the pulses. Using computer models and engineering methods, he design patterns of stimulation, like Morse code, that maintain the device’s efficacy while making it more efficient. Deep Brain Innovations, then, thinks it can use that technique to improve the longevity of implanted DBS devices and reduce replacement-related risks and costs.DBS devices comprises electrodes, leads and a pulse generator that are implanted in patients. They deliver electrical pulses to targeted areas of the brain to block electrical nerve signals that generate PD symptoms like tremor, stiffness, slowed movement and walking problems. Clinicians program a “dose” of therapy by selecting the amplitude of stimulation delivered, the duration of the pulse and the frequency of stimulation.
Over the last few years, the team has done a series of clinical studies with thought leaders at Duke University, Emory University and Wake Forest Baptist Medical Center that have demonstrated effectiveness of the technique, Thrope said. Now, Deep Brain Innovations is looking to secure a commercial partner with which it can run a final clinical trial, complete the regulatory process and bring the device to market within the next 24 months.
“Now what you can do is modify (a device’s) pattern through software, whether that’s with technology already on the market or a company that’s bringing a new product into the marketplace,” Thrope said. “We should be able to accelerate the process of delivering this particular new therapy into the marketplace in a much more efficient manner that if you were coming up with a totally new therapy.”
Formed in 2012, Deep Brain Innovations is the latest spinoff of NDI, which invests in and develops neurostimulation technologies in large markets where there’s at least one validated product but where needs still exist. The global market for neurostimulation devices is expected to grow rapidly, reaching $6.8 billion within three years.
NDI has also spun out SPR Therapeutics, which is commercializing a device for shoulder pain in post-stroke patients, and Checkpoint Surgical, a device to help doctors locate nerves during operations. The last product Thrope and Grill worked on together, a bladder pacing system called MedStim, was acquired by Medtronic for $42 million in 2008.


Read more: http://medcitynews.com/2013/05/ndi-medical-launches-spinoff-to-optimize-deep-brain-stimulation-for-parkinsons-disease/#ixzz2zM2PjXu6

Biotechnology startup developing remedy to reduce Parkinson’s disease drug side effects

January 25, 2013 6:08 pm by  | 1 Comments

A drug developer believes it has a treatment that could limit the side effects of L-Dopa. A New Jersey foundation’s venture investment arm has allocated $500,000 for the new company towards advancing its research.
MentiNova’s oral drug would curb dyskenesia the involuntary movements caused by long-term use of levodopa, or L-Dopa, a drug taken by many of the 1 million people with the condition. Parkinson’s disease, a degenerative disease of the central nervous symptom, kills cells in the brain that generate dopamine which control motor function. The reason why this happens with LDopa and drugs like it is that they intermittently deliver dopamine, and that causes peaks and valleys in dopamine levels that can influence changes in motor function.
L-Dopa has been a dominant drug for Parkinson’s disease because it has been found to be the most efficacious.
Dr. M. Maral Mouradian, a co-founder of the company, is a professor of neurology and director of the Center for Neurodegenerative and Neuroimmunologic Diseases at the University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School in Piscataway, NJ. By the company’s reckoning, dyskenesia related to L-Dopa affects 60 percent to 80 percent of the patients taking LDopa.

MentiNova isn’t the only company developing a treatment in this area. Serina Therapeutics in Huntsville, Alabama has developed a once-weekly injected drug that would alleviate motor complications. Impax Laboratories recenty suffered a setback with its extended release treatment to prevent spasms in patients after it received a complete response letter from the US Food and Drug Administration.Foundation Venture Capital Group CEO George F. Heinrich noted that because  the drug has already been approved for another indication, that could speed up the IND filing for the treatment.

more: http://medcitynews.com/2013/01/biotechnology-startup-developing-remedy-to-reduce-parkinsons-disease-drug-side-effects/#ixzz2zM15aMuQ

GLNT gets another patent to treat Parkinson’s for transcranial direct current stimulation during sleep


Great Lakes NeuroTechnologies, a Cleveland-area company that promised more focus on DBS treatments as well as new products this year, has expanded its intellectual property in that area
 The patent covers a wearable apparatus that positions an array of electrodes on the surface of the scalp and provides low-dose stimulation to the brain using transcranial direct current stimulation (tDCS) during different stages of sleep.
“While current approaches aim to target the location of stimulation to the brain, this approach is targeting the timing of stimulation by delivering it during sleep,” said Dustin Heldman, principal investigator and biomedical research manager.
Because the device method works while the patient is sleeping, it should limit patient discomfort while maybe targeting brain states likely to improve motor symptoms, according to the company.
The phase 1 clinical study for this method is ongoing.
Brian Kolkowski, EVP and general counsel at GLNT, said a growing patent portfolio that protects technology in the company’s targeted markets provides a strategic advantage.
Movement disorders, especially Parkinson’s, have been a large focus of GLNT, which also deals with telehealth and physiological monitoring for research and education.


Read more: http://medcitynews.com/2013/07/glnt-receives-another-patent-to-treat-parkinsons-this-time-for-deep-brain-stimulating-method-delivered-while-patient-snoozes/#ixzz2zLylIRYM

Prana’s Parkinson’s drug meets foundation’s toxicology, genotoxicity and safety milestones

Prana’s Parkinson’s drug meets foundation’s toxicology, genotoxicity and safety milestones

August 29, 2012 10:22 am by  | 0 Comments

Prana Biotechnology Limited (NASDAQ: PRAN) announced today that its lead compound in development for Parkinson's disease (PD), PBT434, had progressed successfully though a series of preclinical development studies used to assess the suitability of a candidate compound for human clinical studies. The studies were funded by The Michael J. Fox Foundation (MJFF) 2011 Pipeline Program to support its 'Therapeutic Development Initiative.' The MJFF Program grant is milestone based. PBT434 achieved all of its milestones in preclinical toxicology studies, genotoxicity and safety pharmacology -- allowing the compound to be positioned for larger scale animal toxicology studies prior to commencing clinical trials.


more: http://medcitynews.com/2012/08/pranas-parkinsons-drug-meets-fox-foundations-preclinical-toxicology-genotoxicity-and-safety-milestones/#ixzz2zLw7ssi3

23andme and the evolution of home DNA testing to the masses Read more: http://medcitynews.com/2013/08/23andme-and-the-evolution-of-home-dna-testing-to-the-masses/#ixzz2zLv0pBNK

August 6, 2013 3:48 am by  | 0 Comments

They’ve come a long way from spit parties.
23andme announced it’s taking its home DNA testing to the masses. Education-and-empowerment heavy spots will run on cable stations including A&E, Bravo and HGTV, said Cat Afarian, public relations manager for 23andme. The company will spend $5 million in ads this year, with a fresh investment in 2014.
The reason for the 23andme commercials is primarily financial. The company closed a $50 million round of investing, which allowed it to cut the price of its genetic testing kits from $299 to $99 – the more consumer-friendly price. 23andme expects the campaign to help it add at least 650,000 customers (they’re currently at 350,000 customers, which they define as anyone who buys the product during the life of the company).

Does this mean the time is right for home DNA testing and that a successful direct-to-consumer campaign will woo consumers? There are plenty of home DNA tests, particularly around paternity, you’ll hear on the radio. But 23andme is promising something much more robust.
When you watch the ad, it’s largely explains the 200+ details 23andme delivers from its tests. But there’s also a hint of an appeal to the empowered patients. Because of 23andme, actors say, they know more about themselves and can “ask more questions.”
That’s “very important,” Afarian said. “Our mission as a company from the very beginning has been to empower individuals to more actively manage their health by providing access to their own DNA. In addition, current trends in consumer behavior have people more involved in managing their health and the health of their family. As a result, they are looking for information that can help them make more informed decisions, a trend exemplified by the growing popularity of health-specific devices and digital health tools.”
Afarian acknowledged their approach has been more grassroots. The spit parties more than five years ago gathered groups together at events as exclusive as New York’s Fashion Week to spit in to tubes and send off for their results (this was back when 23andme was “slashing” its price to $399). In following years, the company directly tested doctors at Cleveland Clinic, which has since led to Cleveland Clinic-23andme partnerships to build genetic databases. You’ll also hear their ads on Pandora and other media.
“The company has relied on word-of-mouth and smaller scale efforts to drive growth to date,” Afarian said. “In the past year, we’ve built out the marketing function of the company to support our strategic focus on growth.  The TV campaign reflects our strategic effort to scale the business.
“Our mission as a company is to make personalized medicine a reality, consumers will always be a primary focus but physicians, researchers and a variety of other audiences will also be important to the company if we are to serve as a catalyst for a widespread shift to personalized and preventative care in the U.S.”


 more: http://medcitynews.com/2013/08/23andme-and-the-evolution-of-home-dna-testing-to-the-masses/#ixzz2zLtn5Q2V

With $1 million seed round, Lift Labs launches spoon for people with Parkinson’s

September 18, 2013 9:22 am by  | 0 Comments


A team of scientists and engineers behind Lift Labs wants to make daily life for people affected by essential tremor and other movement disorders like Parkinson’s disease a little easier.
The San Francisco startup has just raised $1 million from angel investors in the Valley in preparation for the launch of its first product, Liftware.
It’s a spoon designed to detect a person’s tremor and move the opposite way, to assist the person with eating. The base of the spoon is embedded with sensors, a microcontroller and tiny motors. When the sensors detect the motion of a tremor, both horizontally and vertically, the microcontroller uses that data to direct the motors to move opposite the tremor.
In clinical studies, the spoon reduced tremor by about 70 percent, the company said. While it doesn’t entirely cancel out a tremor, these testimonial videos show that it makes quite a difference.

Lift Labs developed the device with an $800,000 grant from the National Institutes of Health and has been working as part of the Rock Health accelerator program this summer to prepare for launch.The spoon head can be detached from the base of the device, and when I talked with co-founder Anupam Pathak earlier this summer, he said the company eventually plans to offer different attachments. For now, though, the spoon is available on the company’s website for $295. Lift Labs is also running a donation-based program in partnership with the International Essential Tremor Foundation in which it will offer the spoon for no cost to a select number of people who don’t have the ability to pay for one.
An estimated 10 million people in the U.S. live with essential tremor.

more: http://medcitynews.com/2013/09/with-1-million-seed-round-lift-labs-launches-tremor-canceling-spoon/#ixzz2zLrtCd6p
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Is losing the sense of smell a biomarker for Parkinson’s disease? Study will look for answer

SMELL

July 2, 2013 9:06 am by  | 0 Commentson prin
NEW HAVEN >> Can you tell the difference between the scents of motor oil, pumpkin pie, rose and lemon?
If not, and if you're over 60 years old, you may be at risk of developing Parkinson's disease.
And you could be a candidate for a study sponsored by the Michael J. Fox Foundation seeking ways to detect the disease before symptoms develop.
Those are known as biomarkers, and whether losing the sense of smell is a biomarker is the purpose of the study, which is being conducted at 24 sites in Europe and Australia as well as the United States; the main site is the Institute for Neurodegenerative Disorders at 60 Temple St.

There are medications to lessen the symptoms, which many people know from seeing Fox, star of "Back to the Future" and "Family Ties," in his TV appearances. He was diagnosed in 1991. Parkinson's is a neurological disorder that affects muscle movement because of a loss of dopamine in a specific area of the brain.What Dr. David Russell, IND's clinical research director, and others are looking for is an "objective measure of presence of the disease and its progress to identify ... the disease very early, before you can see symptoms," Russell said.
The search for a treatment, "preventing neurons from losing function or dying" is the "Holy Grail" of Parkinson's research, Russell said. So far, the search has been in vain.
"Parkinson's disease has been defined either as a collection of symptoms or by comparison to animal models of Parkinson's, which is flawed," Russell said. "In trying to get a neuro-protective treatment, it has failed many times."
What is known is that one in 100 persons over 60 will suffer from Parkinson's, according to michaeljfox.org (Fox's diagnosis, at about 30, was unusual). Loss of the sense of smell "is a common but little noticed symptom that may occur years before the onset of motor symptoms or a (Parkinson's) diagnosis," according to the website.
The new study is the second part of a $55 million biomarker study sponsored by the Fox Foundation. The first studied those who already had been diagnosed with the disease. Now, researchers want to study those who are at risk of developing Parkinson's. Besides loss of smell, other possible biomarkers being studied include a sleep disorder, REM behavior disorder, and a mutation in the LRRK2 gene.
Those who are interested in participating in the study will be given a smell test: booklets containing 40 pages with a scratch-and-sniff patch and four choices. Some are harder than others, although it might seem like it would be easy to tell whether an odor is pizza, turpentine, clove or grape. Or skunk, mint, fruit punch or cola. How about dill pickle, bubble gum, wintergreen or watermelon?
Smell is a tricky sense. In a previous study, 70 percent of people who lost their sense of smell did not realize they had, "and many people who think they've lost their sense of smell haven't," Russell said. Women have a better sense of smell than men, in general, and it declines with age.
After completing the smell test, those accepted into the study may have brain scans done, a physical and a medical history. They will be monitored for five years.
"My vision of the cure of Parkinson's is to detect it early, before there's symptoms, and slow it down enough that people never get the symptoms. It's like treating cholesterol before people have a heart attack," Russell said.
For more information, go to www.michaeljfox.org/PPMI or call 877-525-7764.
Call Senior Writer Ed Stannard at 203-789-5743. ___


more: http://medcitynews.com/2013/07/is-losing-the-sense-of-smell-a-biomarker-for-parkinsons-disease-study-will-look-for-answer/#ixzz2zLq0IGT0

Pacemaker-like device offers help for people suffering from Parkinson’s

Pacemaker-like device offers help for people suffering from Parkinson’s

March 18, 2014 6:15 am by  | 0 Comments

Walter Lindstrom is wired, each of the stopwatch-size devices implanted in his chest connectvia leads running up his neck to a set of electrodes in his brain.
But the device that turns him on and off is wireless.
In a demonstration in his neurosurgeon's office, a handheld "programmer" -- roughly the size of a cellphone -- sent a signal to the pacemaker-like device in the right side of his chest, delivering electrical pulses to the right side of his brain.
When Lindstrom, 72, gets turned on, his tremors turn off. Turned off, Lindstrom's left hand immediately started to shake.
The electrodes are implanted to regulate the abnormal impulses that accompany some neurological conditions. And it smooths out the "on time" and "off time" experienced by many patients as the effectiveness of their medication rises and falls.If deep brain stimulation sounds like a technique of torture, Lindstrom, who has Parkinson's disease, said the surgeries to implant his devices were mostly painless. And for him, the results are "awesome," he said, quelling his tremors and allowing him to cut the medication he takes by more than half.
"DBS has really revolutionized the care certainly for Parkinson's disease and essential tremor and dystonia, to where you can really improve their quality of life," said Jamie Mark, a nurse practitioner who works with DBS patients at Northwest Neurological in Spokane. "You can make them better. You can improve how they function on a day-to-day basis."
Since the FDA approved deep brain stimulation, first in the late 1990s for essential tremor, it's been performed on tens of thousands of people. And the treatment may be poised to expand its reach, drawing attention for its potential to treat problems beyond movement disorders, including Alzheimer's disease, depression and obsessive-compulsive disorder.
Dr. Jonathan Carlson, a neurosurgeon at Inland Neurosurgery and Spine Associates, performed Lindstrom's surgeries. Among brain and spine surgeries, he said, deep brain stimulation is his passion. Patients who undergo the therapy end up better, he said, rather than disabled as a result of the catastrophes -- brain tumors, traumatic injuries -- that sometimes lead to surgery for other patients.
But, because it comes with risks, it should only be done when medication doesn't work or its effectiveness has worn off, Carlson said. Particularly for Parkinson's patients, he said, drugs can work very well with minimal side effects for years.
The major risk of deep brain stimulation is bleeding in the brain, or stroke. About 3 in 1,000 patients suffer severe stroke-like effects, Carlson said.
Lindholm said he considered the risks and decided the benefits outweighed them.
For his brain surgery, he was fitted with a special frame to keep his head still. Two small holes were drilled in his skull, and wire leads with electrodes at the end inserted, one for each side of his brain.
He got local anesthesia to numb his scalp but was awake when doctors inserted the electrodes so they could talk to him, ensuring they were placing the electrodes correctly and stimulating the right areas of his brain.
To find the exact right spots, they consult MRIs of the patients' brains and listen to individual neurons using tiny microphones -- "they sound like fuzzy noise, popcorn-ish," Carlson said. They turn on the stimulator during surgery and observe the effects. If a tremor stops, that's good.
Lindholm's second surgery was done under general anesthesia. Two neurostimulators, the pacemaker-like devices, were implanted under the skin on his chest, one on each side. Wires were run from his head down his neck and shoulder to connect the electrodes in his brain to the neurostimulators in his chest.
He returned to his doctor's office a few weeks later for "programming" -- the stimulators turned on using that wireless remote control, and the level of stimulation adjusted over time.
Getting the mix of programming -- levels of electrical stimulation -- and reduced medication just right takes about three to six months, Mark said.
It also involves reducing the side effects of stimulation, which include tingling, slurred speech, dizziness, vision changes and tightness in the face or arm.
Mark said she tells patients considering the treatment to consider how their disorders respond to medication. Deep brain stimulation is not a cure, and it does not slow disease progression, she said.
"The things that improve when they take medicine are most likely the things that'll improve with surgery," Mark said. "The other key is for them to think about their best 'on time,' when they take their medicines and they're doing their best. DBS surgery is meant to give them more of that time. But it's not expected to make them any better than their best on time, prior to surgery."
Lindstrom, a retired firefighter who lives in Spokane Valley, was diagnosed about a decade ago with Parkinson's.
Since starting the therapy, he's been able to resume his work on cars, a hobby he'd had to abandon: "That's a real trick with Parkinson's, to line up wires and solder," he said. "I can do it now."
As a person with a movement disorder, Lindstrom is typical among people receiving deep brain stimulation.
But as researchers investigate the technique's effectiveness for a range of disorders, the therapy may soon reach new categories of patients.
"We grew up watching these science fiction movies -- people becoming the Borg or the Matrix," Carlson said. "We're instrumenting the brain. We're sticking electricity into the brain and changing how the brain works. It's really pretty cool."
Along with depression, OCD and epilepsy, researchers throughout the U.S. are recruiting participants for studies on deep brain stimulation to treat a variety of ailments, including urinary tract infections, opiate addiction, alcohol addiction, schizophrenia, anorexia nervosa and Tourette's syndrome.
The prospects of using the therapy to treat depression and Alzheimer's, in particular, have generated buzz in the medical community.
But researchers have found a placebo effect -- and the fact that patients received mental health therapy -- responsible for improvements in patients with depression who received deep brain stimulation, Carlson said.
He said he's cautiously hopeful, though, that it could help treat dementia or slow the progression of disease in people with Alzheimer's.
"We really won't know for another five years if it helps for Alzheimer's," Carlson said. "If it does, it's going to be a really big deal." ___


more: http://medcitynews.com/2014/03/pacemaker-like-device-offers-help-people-suffering-parkinsons/#ixzz2zLm20UPz

Could Parkinson’s disease progression be monitored with a phone call?

February 6, 2014 8:37 am by  | 0 Comments

One day monitoring the progression of Parkinson’s disease could be as simple as a phone call. At least that’s the idea of a collaboration between PatientsLikeMe and Sage Bionetworks, which promotes innovations in personalized medicine. They are looking for people with Parkinson’s disease to participate in a voice analysis study with the caveat that patients will get access to results “as soon as possible,” according to a statement from the patient-focused group. The long-range goal is to reduce the cost of monitoring and make it more efficient.
The study’s design is part of a push to democratize clinical trials. Up to 1.5 million Americans have the disease, according to Parkinson’s Action.
The Patient Voice Analysis project is centered on a life science innovation to develop voice analysis tools that use machine learning to monitor the progression of Parkinson’s. It will combine data from two sources: phone-based voice recordings and software developed by TED fellow Dr Max Little to detect markers of Parkinson’s disease. Study participants will use PatientsLikeMe’s Parkinson’s Disease Rating Scale, which documents patients’ answers to questions and measures treatment effectiveness and disease progression.
The motivation behind crowdsourcing the analysis is to identify relationships between voice markers, such as tremors in speech, and clinical signs of Parkinson’s disease, such as tremors in the body, so that it becomes possible to monitor patients’ progression with a short phone call. Currently, monitoring patients with Parkinson’s requires them to undergo multiple lab visits which can ramp up costs and take more time.
People with Parkinson’s disease interested in participating in the study can read more about it here.The data from the study will be analyzed by Little and scientists from PatientsLikeMe and Sage Bionetworks. As the study progresses, the de-identified data sets will be made available to the research community through Sage Bionetworks’ cloud-based computational research platform.

more: http://medcitynews.com/2014/02/listening-parkinsons-voice-analysis-study-tests-viability-using-phone-calls-track-disease-progression/#ixzz2zLjB4bog

A finger sensor & app could make Parkinson’s disease symptom monitoring more scalable Read more: http://medcitynews.com/2014/04/remote-monitoring-parkinsons-disease-symptoms/#ixzz2zLgpIfiz

Thanks in part to a $1.5 million grant from NIH, Great Lakes Neurotechnologies thinks it can make its Parkinson’s disease symptom monitoring technology more scalable and flexible by taking it mobile.
GLN makes the FDA-cleared Kinesia technology platform, which uses a patient-worn sensor and PC tablet-based software to quantify and monitor motor-related symptoms of Parkinson’s. While it’s found traction in the clinical trials market with companies developing new treatments for Parkinson’s, the company says the price point has kept it from widespread use in traditional patient care.
The current system comprises a sensor device that a patient with Parkinson’s disease wears on his finger as he performs tasks. Along with the sensor, the patient kit includes a tablet with broadband connectivity that instructs the patient through assessments, collects data from the sensors and pushes data to the cloud. Via a web portal, clinicians can access reports on patients’ progress.
The app should be available by the end of 2014 in the U.S. and Europe, Cleveland-based GLN said.Aside from use in monitoring disease progression and evaluating how new therapies affect clinical trial participants’ Parkinson’s systems, the Kinesia system can also help neurologists fine-tune the settings of deep brain stimulation devices after they’ve been implanted. The sensor captures linear acceleration and angular velocities, and clinically validated algorithms in GLN’s software turn them into scores that can help clinicians gauge the severity of a tremor at a given time.


Read more: http://medcitynews.com/2014/04/remote-monitoring-parkinsons-disease-symptoms/#ixzz2zLgABLWy

Thursday, April 17, 2014

Newly Funded Projects: Probing the Protein Parkin

FoxFeed Blog


Posted by  Maggie McGuire, April 16, 2014
Newly Funded Projects: Probing the Protein Parkin
The protein parkin normally breaks down other, damaged proteins in the cell. In Parkinson’s disease (PD), the loss of parkin activity may lead to build-up of damaged proteins and, subsequently, cell death. The Michael J. Fox Foundation recently funded a slew of projects to learn more about the role parkin plays in Parkinson’s and how they might target this protein to stop disease progression. Below is a selection of the most recent to hit our Funded Grantsdatabase.
Examining How Parkin Works with Alpha-synucleinDeniz Kirik, MDLund University, SwedenIncreasing parkin activity may keep alpha-synuclein from toxic clumping.Alpha-synuclein is another protein of great interest to Parkinson’s researchers; it clumps in the cells of people with PD. Since parkin helps clear out toxic proteins, scientists are curious about the relationship between these two. This project will study how parkin affects alpha-synuclein in dopamine neurons, which are lost in PD. Scientists will compare the concentration of alpha-synuclein in the presence and absence of parkin function. Evidence that increased parkin activity could avoid alpha-synuclein clumping would support parkin as a target to slow or stop PD.
Turning On Inactive ParkinVicki Nienaber, PhDZenobia Therapeutics, Inc., CaliforniaActivating Parkin with Novel Compounds
Jennifer Johnston, PhDAnnoah Discovery, California
Developing drugs to make inactive protein active could protect cells from damage.Parkin is present in cells in inactive (off) and active (on) states, and, theoretically, more active parkin could protect cells from damage and slow or stop PD. These two projects use different methods to introduce parkin to small fragments of drugs that may turn the proteins from off to on. When they have identified candidates, scientists will continue to develop them toward disease-modifying drugs.
Identifying Where Parkin Interacts with Other PlayersIrene Pichler, PhDEuropean Academy of Bolzano, ItalyKnowing where on its structure parkin binds with other proteins could point to a drug target.In PD, part of the cell called the mitochondria (the “powerhouse”) is defective. Normally parkin plays a role in keeping mitochondria healthy. This project will identify where on the protein (the binding site) it interacts with protein in the mitochondria. Then they will test whether in PD the binding site is abolished or weakened. Their hypothesis is that the normal interaction between parkin and this mitochondrial protein is important for mitochondrial health. Mimicking this protein-protein interaction may help keep mitochondria healthy and stop PD.
Pumping More Parkin into CellsJason Wong, PhD, MBAiProgen Biotech, Inc., Canada

Financial Assistance

Financial Assistance

Finding financial assistance for people with Parkinson’s disease can be difficult.  It will require resourcefulness, perseverance and patience.  By being creative and organized, you should be able to find some amount of help and reduce your financial stresses.

Saving on Medications

Related Resources from the PD Resource List

Melvin Weinstein Parkinson's Foundation (MWPF)
Category: Financial Assistance and Other Resources
Resource Type: National Organizations
Phone: (757) 313-9729
Email: help@mwpf.org
Associated URL: www.mwpf.org
Language: English
This nonprofit organization offers tailored assistance to individuals with PD that are struggling with financial issues. Through the Helen M. Lynch Direct Aid Fund of the Parkinson's Disease Foundation and the Melvin Weinstein Parkinson's Foundation, funds are available for individuals who meet certain eligibility requirements to assist with paying for a home health aide or visiting nurse and to purchase such medical equipment as wheelchairs, walkers and canes.
TogetherRx
Category: Financial Assistance and Other Resources
Resource Type: Websites
Toll Free: (800) 444-4106
Associated URL: www.togetherrxAccess.com
Language: English
This website, sponsored by pharmaceutical companies, offers a 40-60 percent discount on certain brand name and generic medications for those who do not have prescription insurance coverage, although not all PD medications are on their list. Website also offered in Spanish.

Navigating Financial, Legal and Employment Issues

From PDF:

You and your family may be planning for your financial future and your employment situation. Parkinson’s disease can require you to plan for both long and short-term costs of medication, home adaptations, insurance and other health care related needs. 
In addition, you may need to face concerns about keeping up with rigorous work demands, when/if/how to tell your employer and whether to apply for social security disability (if you are under the age of 64) you may have concerns about whether to tell your employer if you have PD.
By planning, you can reduce the inherent stresses that come with these considerations. Knowledge of the laws in your state and of available resources can help you to adapt your current job setting to your condition or perhaps find a better suited job for you.
This section explores these issues and offers tips and advice.

Wednesday, April 16, 2014

One of the First INVISIBLE Signs of Parkinson’s Disease


Posted: 14 Apr 2014 05:00 AM PDT

Were you aware that depression is one of the first and ongoing signs of Parkinson’s disease? Yep.
So maybe, just maybe, those mood swings you or a loved one has been struggling with in their journey with PD can be alleviated with some help from your doctor. And maybe, just maybe, you’ll feel a little bit more normal once again.
Whatever normal is!

The post One of the First INVISIBLE Signs of Parkinson’s Disease appeared first on Parkinson's Journey.

Ten Things Parkinson’s Patients Want

Posted: 15 Apr 2014 05:00 AM PDT-Ten Things Parkinson’s Patients Want appeared first on Parkinson's Journey
  1. To feel good.
  2. To smell (what’s baking in the oven).
  3. To have people believe that the person with PD isn't pretending to have a chronic disease. Really. We have better things to do.
  4. For others to understand that although they can’t see all of the effects, the disease is real.
  5. More dopamine. We gotta have more cow bell dopamine.
  6. To not shake all the time. It would be so nice to stir our coffee because we want to.
  7. For others to be aware of the struggles and invisible symptoms people with Parkinson’s face so that they are better able to understand the fervency and urgency of a cure.
  8. To find a drug that doesn’t knock you out for half the day, but instead, knocks out PD.
  9. plastic bat to hit others over the head when they make thoughtless comments.
  10. A cure. .

Tuesday, April 15, 2014

20TH PARKINSON'S UNITY WALK APRIL 26,2014

Event Info > Day of Event

Make Every step Count

20th Parkinson’s Unity Walk (PUW)
Saturday,  April 26, 2014 (Rain or Shine)

Join us for a gentle 1.4 mile walk in Central Park. Visit informational booths along Margot Zobel Way which will include Ask the Healthcare Experts, and representatives from our sponsors and major U.S. Parkinson’s foundations.

Walking is optional. Stay and enjoy the day’s activities!
Twitter hashtag: #puw2014
LOCATION
72nd Street Bandshell, Central Park, New York, NY. Use 72nd Street Park entrance on Fifth Avenue or Central Park West.
REGISTRATION OPEN:             8:30 am to 1:00 pm
BANDSHELL BOOTHS OPEN:  8:30 am to 2:00 pm (Team Photos and Make A Sign)
BOOTHS OPEN:                        9:00 am to 2:00 pm (On Margot Zobel Way)
WALK KICK-OFF:                      9:45 am
WALK BEGINS:                        10:00 am
PROGRAM POST WALK:        11:00 am (Approximately)
IMPORTANT LINKS
REGISTRATION
While there is no registration fee, we encourage all registered walkers to raise funds on behalf of the Walk. Remember, 100% of donations go to research.
Go to the Registration booth if you need to do any of the following: 
  • Register for the Walk (if you have not done so online or by mail).
  • Pick up your Unity Walk T-shirt (if eligible).
  • Registered Walkers who donate or fundraise $100 by the day of the Walk and are present at the Walk will receive a T-shirt, while supplies last, (for a team, average raised per team member is taken into account).
  • Turn in your donations.
Any of our Registrars can help you on the day of the Walk. Go to any seated Registrar; there are no special lines; make only one stop to pick up shirts and turn in donations. All walkers are registered as individuals, even if they are part of a team -- there is only one envelope per walker so you will be sure to get credit as the fundraiser. We recommend that you allow extra time to go through Registration.
2014 PUW DEADLINES
Team Registration Deadline:  All teams must be registered prior to the day of the Walk.
(Team registrations will not be accepted on the day of the Walk.)

Deadline to Give and Turn in Donations:  June 7, 2014. All donations received by June 7, 2014 will be credited to the 2014 Walk.
(Donations where all information is complete and legible will be acknowledged by July, 2014.)
PARKINSON’S DISEASE INFORMATION AND RESOURCES AT THE WALK
Be empowered and take advantage of the educational information available at the Walk. Learn about resources for people living with PD and their families. In addition to the organizations listed below, visit the Ask the Healthcare Experts booth on Margot Zobel Way.
REFRESHMENTS
No need to leave the park for lunch. Visit the food trucks and have a bite while you are visiting the informational booths along “Margot Zobel Way.”

Poem by Maryum "May May" Ali Read at the 19th Parkinson's Unity Walk


May May Ali wrote and read the following poem on the day of the 19th Parkinson's Unity Walk, held on Saturday, April 27, 2013.  This has become somewhat of a tradition and the Unity Walk considers May May Ali our Official Unity Walk Poet.


“CLRO1”
By May May Ali
 

How can the progression of Parkinson’s be slowed down or even stopped?
Some of the funds raised today will be used to research this plot.

The story will begin with a villain, with a major role in the disease.
Now, this may get a bit complex, so be patient with me please.

The clumping up of proteins is a process of PD.
An Alpha-Synuclein is the protein, you see.

If this clumping would just stop, it would be a Parkinson’s wish.
Guess what, researchers have stopped it in a Zebra fish.

I know you might be thinking, how could this be done?
Our hero is a molecular tweezer called CLR01!

Since I’m not a doctor, I’ll end it here and suggest what you can do.
Get informed about research that can ultimately benefit you.