Apply for Free Liftware Stabilizing Spoon

By Maggie McGuire Kuhl

Parkinson’s disease is expensive; there are medication and physician co-pays, forced retirement, and other pricey accommodations. As new technologies emerge that can help people with Parkinson’s disease, cost may limit their widespread use.

Liftware — makers of a stabilizing handle that helps people with tremor from Parkinson’s, essential tremor or similar conditions — recognizes this limitation. The company has announced a “buy one, give one” match program. For each device purchased this week (November 29 through December 5), Liftware will gift a handle and soup spoon attachment to someone in financial need.

The Michael J. Fox Foundation has partnered with Liftware and the Melvin Weinstein Parkinson’s Foundation to manage this Uplift Program. Apply today.

In addition, Liftware has reduced the price of its handle and soup spoon attachment starter kit to $195 (a $100 discount) through December 31, 2015. Everyday spoon and fork attachments are also available.

Apply to the Uplift Program for a gifted Liftware starter kit.

Source:: Fox Feed Blog

Doug, Heather, and Friends: On October 16, talented guitarist Doug Vanderlaan and vocalist Heather Perry hosted a night of live music at Three Layers Cafe in Jacksonville, Florida. For years, Doug and Heather have been a musical fixture in their community, hosting shows that feature a wide-ranging assortment of songs. When Doug was recently diagnosed with Parkinson's, the duo decided to join Team Fox and host a show with musical guest Once a Week in support of Parkinson's disease research. Guests were encouraged to make a donation for each song they wished to hear live on the night of their performance. With nearly $4,500 raised, Doug and Heather doubled their initial fundraising goal!

Playing to Beat Parkinson's: After being diagnosed with Parkinson's at age 36, Team Fox member Melissa Tatum transformed her passion for folk music into a creative way to engage her local community of Tucson, Arizona in supporting Parkinson's research. Through her WOVOG Foundation (With One Voice and One Guitar), Melissa has utilized the talent of local musical voices to host benefit concerts and create themed CDs with sales benefitting Team Fox. Her most recent concert — Playing to Beat Parkinson's on November 15 — welcomed nearly 400 guests who enjoyed a special performance by hometown favorite Run Boy Run and helped raise over $4,900. Learn more about WOVOG's efforts and upcoming events.

Hope For Chirstmas: When Michael Raskovsky's dear friend George Hill was diagnosed with Parkinson's, Michael knew very little about the disease. Over the years, Michael witnessed the disease affect George's mobility and communication and yet, the disease could not stifle George's love of singing and creating music. Michael set out to find a way to bring awareness to Parkinson's and honor George's passion and talent. With the help of an amazing volunteer group of musicians, singers, engineers and producers, the holiday album, Hope for Christmas, was created. The album showcases George, along with several artists and songs that celebrate the holiday spirit. The album is available for purchase on iTunes. All proceeds from the Hope for Christmas album will be donated to Team Fox.

Inspired? There are many unique ways to join in and create your own event! Check out teamfox.org for more information and to find events near you.

'>

Music with Meaning

By Shari-Liane Sangster

Team Fox members are using their musical talents to bring awareness to Parkinson’s disease. Through the power of music, members are bringing their communities together and creating inspiring fundraising concerts and albums that showcase their passion. Check out a few fundraisers that are making music with meaning.

Doug, Heather, and Friends: On October 16, talented guitarist Doug Vanderlaan and vocalist Heather Perry hosted a night of live music at Three Layers Cafe in Jacksonville, Florida. For years, Doug and Heather have been a musical fixture in their community, hosting shows that feature a wide-ranging assortment of songs. When Doug was recently diagnosed with Parkinson’s, the duo decided to join Team Fox and host a show with musical guest Once a Week in support of Parkinson’s disease research. Guests were encouraged to make a donation for each song they wished to hear live on the night of their performance. With nearly $4,500 raised, Doug and Heather doubled their initial fundraising goal!

Playing to Beat Parkinson’s: After being diagnosed with Parkinson’s at age 36, Team Fox member Melissa Tatum transformed her passion for folk music into a creative way to engage her local community of Tucson, Arizona in supporting Parkinson’s research. Through her WOVOG Foundation (With One Voice and One Guitar), Melissa has utilized the talent of local musical voices to host benefit concerts and create themed CDs with sales benefitting Team Fox. Her most recent concert — Playing to Beat Parkinson’s on November 15 — welcomed nearly 400 guests who enjoyed a special performance by hometown favorite Run Boy Run and helped raise over $4,900. Learn more about WOVOG’s efforts and upcoming events.

Hope For Chirstmas: When Michael Raskovsky‘s dear friend George Hill was diagnosed with Parkinson’s, Michael knew very little about the disease. Over the years, Michael witnessed the disease affect George’s mobility and communication and yet, the disease could not stifle George’s love of singing and creating music. Michael set out to find a way to bring awareness to Parkinson’s and honor George’s passion and talent. With the help of an amazing volunteer group of musicians, singers, engineers and producers, the holiday album, Hope for Christmas, was created. The album showcases George, along with several artists and songs that celebrate the holiday spirit. The album is available for purchase on iTunes. All proceeds from the Hope for Christmas album will be donated to Team Fox.

Inspired? There are many unique ways to join in and create your own event! Check out teamfox.org for more information and to find events near you.

Source:: Fox Feed Blog

Enhanced detection of Parkinson’s

New research by biologists could lead to improved methods of detection for early-onset Parkinson’s Disease. By mapping the visual responses of fruit flies with different Parkinson’s genes, the scientists built a substantial data bank of results. Using this they were able to classify unknown flies as having a Parkinson’s related mutation with 85 per cent accuracy.

Source:: Science Daily

A Letter from “Back to the Future” co-creator Bob Gale

November 25, 2015

Dear Friend,

As you know, in our 1989 film Back to the Future Part II, director Robert Zemeckis and I made a lot of predictions about the world of 2015, and on October 21st, we got to see how many of them came true. It turns out, we got more right than we expected, including flat screen televisions with home video conferencing, drones, payment by thumbprint, voice activated appliances, rejuvenation of decaying urban areas with green spaces, a major league baseball team in Miami and big screen 3D movies.

Now that “we’re in the future,” I’ve been asked to make some predictions about 2045. Although I don’t expect we’ll have time traveling flying DeLoreans, I think we might have recreational hoverboard parks. Undoubtedly, the Cubs will win the World Series in 2045!

And one other thing I’m going to predict is a cure for Parkinson’s disease. This is a prediction you can help make happen by supporting the Michael J Fox Foundation for Parkinson’s Research (MJFF) in any way that you can. It’s an organization that’s working to create a better future, not only for those living with Parkinson’s disease, but for their families as well.

In the words of “Doc” Emmett L. Brown, “your future is whatever you make it, so make it a good one.” So please join me in supporting MJFF and Team Fox: together, we can make a future without Parkinson’s disease a reality.

Thank you.

Sincerely,

Bob Gale

Source:: Fox Feed Blog

Ask the MD: Glutathione and Parkinson’s

By Rachel Dolhun, MD

In this post I’m discussing a substance you may have heard of — glutathione. It’s made naturally by the body but is also available in certain foods and over-the-counter supplements. Glutathione levels decrease with aging and certain conditions, including Parkinson’s disease (PD). In people with PD, glutathione levels are lower in the brain, specifically in the substantia nigra (the area in which dopamine cells are lost). Also, the level of reduction in glutathione has been associated with Parkinson’s disease severity (less glutathione, more advanced PD).

The Role of Glutathione

Glutathione functions as an antioxidant — a compound that clears out free radicals. Free radicals are molecules that are potentially toxic to cells. They are formed in the body from normal metabolism (such as converting food to energy), but are increased by exposure to environmental toxins, such as cigarette smoke and air pollution. Buildup of free radicals contributes to a condition called oxidative stress, which is associated with aging and PD. Antioxidants may therefore offset oxidative stress by removing free radicals.

In addition to its work as an antioxidant, glutathione may support the mitochondria — the cell’s energy producers. This could prevent cell death, meaning that glutathione could conceivably operate as a “neuroprotective” agent — one that could slow or stop the progression of PD.

The Research on Glutathione

For these reasons, glutathione supplementation has been and is currently being studied to determine if it could provide symptomatic benefit to people with Parkinson’s. Glutathione can be given through several routes — oral, intravenous (IV) and intranasal (through the nose). Each method has advantages and limitations.

Although a pill would be ideal, oral glutathione is poorly absorbed from the digestive system and doesn’t get into the brain very well.

Intravenous administration avoids these absorption concerns and raises blood levels of glutathione. Two clinical trials of IV glutathione have been conducted. The first (reported in 1996) was open-label — all nine people with Parkinson’s were aware they were given IV glutathione. Participants’ motor symptoms improved, and this benefit lasted for two to four months following discontinuation of glutathione. The second study (reported in 2009) was a randomized-controlled trial of 20 people with PD — half were given placebo and half were treated with IV glutathione. The therapy was shown to be safe, well tolerated and possibly beneficial for symptoms. To determine if IV glutathione is a truly efficacious symptomatic therapy for Parkinson’s, larger, randomized, placebo-controlled trials need to be done. These haven’t been performed, though, perhaps because of this treatment’s downsides — IV glutathione can be expensive, inconvenient and associated with potential side effects (bleeding, infection, blood clots). There are also other ways to give glutathione (intranasally) that are less invasive and may be more effective.

Early research efforts toward intranasal glutathione showed that it is safe, well tolerated and raises levels of glutathione in the brain (as seen on imaging scans). An MJFF-funded Phase IIb placebo-controlled trial is currently examining the effects of intranasal glutathione on Parkinson’s motor symptoms. If these results are positive, a Phase III trial will aim to determine whether intranasal glutathione is disease-modifying.

The Current State of Glutathione

Since glutathione is categorized as a supplement, it doesn’t require U.S. Food and Drug Administration approval, and is already widely available. Even though it isn’t very effective, oral glutathione is offered by many retailers. Some intranasal sprays (different formulations from those being used in studies) are sold as well. And even though there is no standard dosing protocol and insurance often doesn’t cover the cost, many doctors and clinics will administer intravenous glutathione.

So why not add it to your regimen? While glutathione is a promising therapy for Parkinson’s, the benefit and efficacy have yet to be confirmed.

The Bottom Line

The desire and need for better symptomatic therapies and certainly for a disease-modifying treatment for those living with PD is more than understandable. We sense that urgency and are working to move promising therapies through the pipeline and to patients as quickly as possible.

Until these are proven, however, proceed with caution. Any therapy — whether it’s a supplement, an over-the-counter medication, or even if it’s described as “all natural” — can cause side effects and could interact with prescription drugs. Discuss all therapies with your doctor before taking them. Weigh the pros and cons, and always check the background and credentials of the physician and pharmacy providing the therapy.

The “Ask the MD” series is supported by Acorda Therapeutics. While our generous sponsors make the “Ask the MD” program possible, their support does not influence MJFF’s content or perspective.

Source:: Fox Feed Blog

Get with the Times: Parkinson’s Diagnosis Criteria Catches Up with Latest Understanding

By Maggie McGuire Kuhl

We’ve learned a lot about Parkinson’s disease in the last 25 years (genetics, for example). However, the gold standard checklist for diagnosis — the respectable, if outdated UK Parkinson’s Disease Society Brain Bank Clinical Diagnostic Criteria — hadn’t caught up.

New diagnostic criteria from an International Parkinson and Movement Disorder Society (MDS) task force comprising experts from four continents published recently in the journal Movement Disorders presents a tool that reflects our current understanding. The Michael J. Fox Foundation is currently funding a validation study of these MDS Clinical Diagnostic Criteria for Parkinson’s Disease.

We spoke to task force co-chair Ronald B. Postuma, MD, MSc, of Montreal General Hospital about the process and promise of this new tool.

MJFF: What is the current state of diagnosis? What gaps do these criteria aim to fill?

Dr. Postuma: The way we that diagnose Parkinson’s now is we document parkinsonism (the cardinal symptoms of tremor, rigidity and/or slowness) and then we decide it’s most likely Parkinson’s disease or not. There are criteria — the one that’s used most is the UK Brain Bank criteria — but they were developed over 25 years ago, and there have been many changes in the field.

But beyond that, what we do diagnostically is not fill out checkboxes as that tool is designed. Experts weigh things; they calculate things to make a decision. So with that in mind our goal is to codify what we do as experts and write it down in a systematic way so it can be applied by people who aren’t full-time Parkinson’s experts, and, importantly, to standardize diagnosis within clinical trials.

There are some absolute exclusion criteria that tell you it’s almost certainly not Parkinson’s. There are other things called red flags that make you worry about the diagnosis, but we know some people with Parkinson’s have that feature. And they’re weighted. You have to have more red flags than supportive features to rule out disease. That recapitulates the organic process when an expert diagnoses Parkinson’s.

MJFF: Why is getting a diagnosis correct so important?

Dr. Postuma: A wrong diagnosis wrong in clinical care is bothersome but not always a major problem. It’s not good for predicting prognosis, but you mostly treat the alternate conditions [multiple system atrophy (MSA), progressive supranuclear palsy (PSP), etc.] in the same way. But misdiagnosis is a disaster in clinical research. If you’re testing a drug for Parkinson’s disease, and 25 percent of your population doesn’t actually have Parkinson’s, you’re in a lot of trouble. You lose a lot of power. The study has to be way bigger than it otherwise would have to be, for example.

Especially early in disease, misdiagnosis rates are as high as 30 percent. Time helps you make the diagnosis. But most studies, especially for disease modification, are looking for people early in disease.

MJFF: So what changes in our understanding of Parkinson’s do these criteria address?

Dr. Postuma: Well, recognition of the non-motor aspect is important. If you see a patient who, after five years of disease, has no non-motor features of disease at all, that’s a red flag that you might be wrong in your diagnosis. So that’s actually been added to the criteria as a red flag. Secondly, the non-motor aspects are the most important way to diagnose prodromal disease. We have published a companion piece of criteria for prodromal selection for clinical trials.

Also, if you have abnormal olfaction (ability to smell) that can be used as evidence for Parkinson’s disease now. It’s a supportive criteria because we know that 80 percent of Parkinson’s patients have lost their sense of smell. And up to 80 percent of people who have alternate causes (PSP, MSA, essential or dystonic tremor) have normal smell. So it’s actually a pretty good diagnostic tool.

Family history of Parkinson’s disease is an exclusion criteria in many old criteria, but now there are clearly familial cases.

MJFF: Why isn’t DaTscan (brain scan to assess dopamine loss) part of the process?

Dr. Postuma: A normal DaTscan is in our criteria as an absolute exclusion. Other diseases with parkinsonism (MSA, PSP) also have abnormal DaTscan, so DaTscan is not useful in the differential diagnosis of true parkinsonism. And it’s not generally available. We want these criteria to be able to be applied everywhere.

MJFF: What can you tell us about the prodromal (before appearance of symptoms) diagnostic criteria?

Dr. Postuma: This is an effort to diagnose those early stages of Parkinson’s before people are aware of parkinsonism. When we develop neuroprotective therapies, we need to intervene earlier. We consider this a research tool only for identifying patients for neuroprotective trials or for identifying patients who need to be followed further.

It’s a very unique approach. What it does is combines a variety things that increase the risk of disease — sleep patterns, smell ability, subtle motor slowing, constipation — but often only do so slightly. It’s a systematic way to add these features together mathematically to come up with the likelihood that the person is in that prodromal state of disease. Not when they’re going to convert to full PD, but to test if they have pathology in their brain.

The diagnostic strength of the information varies immensely. Constipation doubles your risk of Parkinson’s, maybe triples it at best. You have to weight that differently than something like REM sleep behavior disorder, which is associated with a 50 to 100 times increased risk of developing Parkinson’s. So you add all the information together, and it gives you an output: this person has a 40 percent risk of prodromal Parkinson’s disease therefore you probably don’t want to include them in your neuroprotective trial, which may have side effects. This person has a 95 percent so definitely is a candidate, for example.

MJFF: How did your task force develop and test these criteria?

Dr. Postuma: The executive of the MDS decided that enough things have changed that we need to work on the definition of Parkinson’s. Once we had outlined our definition, we realized that we need some criteria to reflect the new definition. So the task force quite early on decided that this would part of this job, and because we are so interested in the early stages, we decided to separate those criteria into diagnostic criteria for clinical Parkinson’s and a separate research criteria for prodromal Parkinson’s.

Dr. Daniela Berg and I held early teleconferences then wrote the initial draft. It went back and forth among the task force members, an iterative process. And then we ran it through some clinics with people who had not seen the criteria before and improved the wording, things that weren’t clear, etc.

MJFF: What are the next steps?

Dr. Postuma: Now we’re testing against true experts in diagnosis. What do the concordance rates look like? Did we get it pretty close or are there big sources of divergence we should fix?

Even today, we think that every study that uses criteria should use these ones. Why wouldn’t you? There are no other criteria that can be used in a clinical trial now that reflect our updated definition of Parkinson’s.

Get answers to your diagnosis questions.

Source:: Fox Feed Blog

U.S. Representatives Call for Increased Medical Research Funding

By Allyse Falce

On Wednesday, over 100 members of the U.S. House of Representatives sent a letter to the House Committee on Appropriations asking the legislative body to increase funding for the National Institutes of Health (NIH).

The NIH is part of the U.S. Department of Health and Human Services and is the nation’s medical research agency. It conducts and supports research to better understand disease, human growth, environmental contaminants and mental health.

In their letter, the signees urged the Appropriations Committee to work with the Senate to increase NIH funding to $32 billion in 2016.

“Insufficient funding for NIH has a serious, wide-ranging impact on our nation’s health and our capacity for medical innovation in the 21st century,” said the representatives.

The NIH is the leading funder of Parkinson’s disease (PD) research — spending $139 million on PD in 2014 — and plays an important role in this field. The agency also provides resources for patients, families and caregivers.

The Michael J. Fox Foundation (MJFF) collaborates frequently with the NIH on such initiatives as the MJFF-led Parkinson’s Progression Markers Initiative and researcher access to Parkinson’s data and biosamples. NIH scientists sit on the MJFF Scientific Advisory Board, and, conversely, MJFF CEO Todd Sherer, PhD, is a member of the NIH National Center for Advancing Translational Science Advisory Council.

“If we are serious about breaking new ground in our understanding of complex diseases like Alzheimer’s and cancer, and if we hope to accelerate the speed with which new cures, treatments, and vaccines are developed, then it’s absolutely essential that we increase funding for medical research at [the] NIH,” said the representatives encouraging increased funding.

Visit the Parkinson’s Action Network website to learn more about PD research funding.

Contact your representative to urge them to support an increased budget for the NIH.

Source:: Fox Feed Blog

Brainstem ‘stop neurons’ make us halt when we walk

A population of ‘stop cells’ in the brainstem is essential for the ability of mice to stop their locomotion, according to a new study. Researchers report a brainstem pathway specifically dedicated to enforce locomotor arrest; its selective activation stops locomotion, while its silencing favors it.

Source:: Science Daily

Getting involved in Giving Tuesday this year is simple:

  1. Make a donation and help speed a cure for Parkinson's disease. Your gift will be matched dollar-for-dollar.
  2. Spread the word about your gift on social media and encourage others to get involved. Share an #unselfie, a photo that represents why you're getting involved this year. Or check out our album of giving badges to let your friends and family know that you made a difference today.

There are many reasons to support The Michael J. Fox Foundation and Parkinson's research this Giving Tuesday. If you're encouraging friends and family to also make a donation in support of Parkinson's research on Giving Tuesday, here are a few powerful reasons to share:

89 cents of every dollar goes straight to research programs. Efficiency is and always has been one of the Foundation's core values.

A future without Parkinson's disease is closer than ever. Four companies are now in human testing of therapies against alpha-synuclein, the most important Parkinson's drug target. Researchers believe that preventing or clearing out clumps of this protein could stop or slow Parkinson's disease progression.

You'll be investing in the most promising research in the field. Since inception, the Foundation has invested in promising science that needed the right support to move forward. That approach has paid off. Of the treatments currently in trials against alpha-synuclein, the Foundation funded two in the early phases of their research, and continues work with all four.

We're also closer to better treatments for the most challenging Parkinson's disease symptoms. Earlier in 2015, two new formulations of levodopa received FDA approval: Duopa and Rytary. Both aim to reduce the amount of time a person with Parkinson's experiences "off" time, periods of slowness, poor mobility and stiffness. A new deep brain stimulation device also passed FDA muster.

More than five million people with Parkinson's disease need better treatments and, ultimately, a cure. Advancing age is the most significant risk factor for Parkinson's disease. As the population ages, experts unfortunately predict that diagnoses will increase.

Help The Michael J. Fox Foundation speed a cure and go out of buisness. Donate for Giving Tuesday.

'>

Giving Tuesday 2015: Support Parkinson’s Disease Research

By Nancy Ryerson

Following Black Friday and Cyber Monday, Giving Tuesday is an international day dedicated to giving back to your favorite causes. This year, it falls on December 1. The Michael J. Fox Foundation has participated for several years, and it’s always inspiring to see the outpouring from the Parkinson’s community and beyond.

Getting involved in Giving Tuesday this year is simple:

  1. Make a donation and help speed a cure for Parkinson’s disease. Your gift will be matched dollar-for-dollar.
  2. Spread the word about your gift on social media and encourage others to get involved. Share an #unselfie, a photo that represents why you’re getting involved this year. Or check out our album of giving badges to let your friends and family know that you made a difference today.

There are many reasons to support The Michael J. Fox Foundation and Parkinson’s research this Giving Tuesday. If you’re encouraging friends and family to also make a donation in support of Parkinson’s research on Giving Tuesday, here are a few powerful reasons to share:

89 cents of every dollar goes straight to research programs. Efficiency is and always has been one of the Foundation’s core values.

A future without Parkinson’s disease is closer than ever. Four companies are now in human testing of therapies against alpha-synuclein, the most important Parkinson’s drug target. Researchers believe that preventing or clearing out clumps of this protein could stop or slow Parkinson’s disease progression.

You’ll be investing in the most promising research in the field. Since inception, the Foundation has invested in promising science that needed the right support to move forward. That approach has paid off. Of the treatments currently in trials against alpha-synuclein, the Foundation funded two in the early phases of their research, and continues work with all four.

We’re also closer to better treatments for the most challenging Parkinson’s disease symptoms. Earlier in 2015, two new formulations of levodopa received FDA approval: Duopa and Rytary. Both aim to reduce the amount of time a person with Parkinson’s experiences “off” time, periods of slowness, poor mobility and stiffness. A new deep brain stimulation device also passed FDA muster.

More than five million people with Parkinson’s disease need better treatments and, ultimately, a cure. Advancing age is the most significant risk factor for Parkinson’s disease. As the population ages, experts unfortunately predict that diagnoses will increase.

Help The Michael J. Fox Foundation speed a cure and go out of buisness. Donate for Giving Tuesday.

Source:: Fox Feed Blog

Stabilizing Spoon Announces Price Reduction and Match Program for Holidays

By Maggie McGuire Kuhl

In nearly one week Americans will gather at their tables with loved ones to give thanks and break bread. There are some challenges to enjoying a Thanksgiving meal with family and friends: a long trip through heavy traffic, perfecting a pumpkin pie. For people with Parkinson’s, however, other issues may preclude them from feasting on the holiday meal.

Tremor, a cardinal symptom of the disease, may make it difficult to partake in the soup course or navigate that slippery cranberry sauce. These limitations may make people self-conscious and lead to isolation, which studies have shown exacerbates Parkinson’s symptoms and negatively impacts wellness.

One company wants to make it easier for people with tremor — from Parkinson’s disease, essential tremor or other conditions — to enjoy meals and time with loved ones. Liftware is a stabilizing handle with soup spoon, everyday spoon and fork attachments.

“We’re enthusiastic about the potential of emerging technologies, including specialized devices like Liftware, to help people with PD live well with their disease while we continue our urgent pursuit of breakthrough treatments and a cure,” said Todd Sherer, PhD, Michael J. Fox Foundation (MJFF) CEO.

Today the company announced that it has lowered its price for the handle and soup spoon attachment through December 31, 2015, to $195 (a $100 discount). In addition, Liftware will run a “buy one, give one” matching program for each device purchased during the week of December 1.

“Our biggest motivation is to help more people and make it easier to put a Liftware device into the hands of everyone who needs one this holiday season,” said Anupam Pathak, Liftware founder.

MJFF is partnering with Liftware to connect the donated devices to those who could not otherwise access this technology. Stay tuned to our blog and social channels for more information on how to apply for a Liftware device.

Source:: Fox Feed Blog