Research Team Reviews This Year’s Progress and Promise of 2016

By Katherine McCarrick

After raising more money than any single year prior thanks to our generous Parkinson’s community, The Michael J. Fox Foundation was in the position to fund a record-breaking amount of critical research grants in 2015. When we ultimately find a cure for Parkinson’s, we’ll look back on this past year and remember several key moments that helped us get there.

We asked some of MJFF’s Research team of PhD neuroscientists and business-trained project managers what Foundation accomplishments they are most proud of from 2015 and the promising initiatives they’re looking forward to in the new year.

Meredith Haupt
Senior Associate Director, Research Partnerships

In 2015 we received more applications and funded more research grants than ever before with $71.8M in new commitments. We’re reaching not just leading researchers in the Parkinson’s disease (PD) field, but new contacts and those who have promising ideas in other fields that could inform our understanding or treatment of PD. This amazing response is a result of work across the Foundation, not just in research but with the support of teams working on community outreach, industry engagement and fundraising.

Sohini Chowdhury
Senior Vice President, Research Partnerships

Any advance in the treatment of Parkinson’s requires patient involvement in key clinical studies. The excitement and already overwhelming involvement surrounding our online study Fox Insight and the wearable data collection partnership with Intel shows that patients are willing to explore how they can participate. Studies that are no longer geography-driven enable us to engage more people online where we can more gather and analyze more data and more quickly share results.

Katie Kopil, PhD
Senior Associate Director, Research Programs

We’re making strides in our work to measure alpha-synuclein outside of the brain. This protein clumps in cells of people with Parkinson’s so it’s both a top therapeutic target and a potential biological marker of the disease process. The data available in 2016 will apprise future clinical trials about who to include in studies and how to measure the impact of new therapies.

Our biomarker portfolio also celebrated the five-year mark of the MJFF-led Parkinson’s Progression Markers Initiative. We’ve expanded to new cohorts, and it’s been able to inform so many new and different studies, including, for example, those involving cognition. The study is not just a flagship design for the Foundation, but for the entire field. It’s a great centerpiece for how we fund research across the spectrum of Parkinson’s disease.

Marco Baptista, PhD
Senior Associate Director, Research Programs

MJFF 2015 efforts in LRRK2 research showcase how competing companies can work together in an unprecedented manner to answer big questions and facilitate drug development. LRRK2 is another target for Parkinson’s researchers, and the Foundation brought together companies working on drugs against LRRK2 to test the potential of this avenue of treatment.

Terina Martinez, PhD
Associate Director, Research Programs

One major priority area of the Foundation is to provide researchers with tools for laboratory studies. In 2015 we developed and launched an alpha-synuclein protein collection and quickly ‘sold out’ showing what a massive service it is for the community. We’ve already started investing in scaling up the stocks in the first quarter of 2016. Our tools portfolio for next year already represents as much research as the last three years combined!

Todd Sherer, PhD

I’m excited by how many new treatments that might target the progression of the disease are now in clinical testing. Our efforts around biomarkers in 2015 are tremendously improving our ability and process for assessing these treatments. We’re able to really target the underlying disease, which has great potential to slow down the disease – the most opportunities we’ve ever had for Parkinson’s.

One of the biggest things for research in 2016 will be getting the right tools in place to measure these biomarkers we’re identifying. I’m enthusiastic about the work being done to develop an alpha-synuclein imaging agent to visualize the protein in the brain.

Jamie Eberling, PhD
Senior Associate Director, Research Programs

The most exciting thing this year was the number of alpha-synuclein therapeutics that are now in the clinic or close to the clinic. The number of different companies that are interested in these therapeutics and the amount of unique approaches being tested is helping us get closer to a treatment to slow or stop disease.

It’s critical that we have an alpha-synuclein imaging agent in order to test these drugs in the clinic. In 2016 I think we’ll see significant progress. We’re funding five programs in this area, and at least one, if not more, will be testing in humans next year.

Kuldip Dave, PhD
Director, Research Programs

There is so much activity with alpha-synuclein therapeutics. Four trials in clinical testing and two with data that their approaches are safe and tolerable is huge progress.

Through our research in 2015, we’ve been able to identify clear gaps in knowledge, and we’re strategically working to fill those gaps. We know that alpha-synuclein clumping in the brain is a culprit of Parkinson’s, we just don’t know which type of alpha-synuclein. In 2015 we funded several studies targeting the toxic species of this protein. Our Linked Efforts to Accelerate Parkinson’s Solutions (LEAPS) study model enables researchers to compare findings to validate one another’s results.

Also, by studying gene mutations, we learned that more needs to be done to collect data on the link between PD and a mutation in the GBA gene. We’ve developed a GBA roadmap, and it’s now a priority area for us in 2016.”

With so much accomplished this year, the research community is already looking ahead to 2016 to continue the momentum and move closer to our ultimate goal: a world without Parkinson’s.

Source:: Fox Feed Blog

Dyskinesia Drug a Step Closer to FDA Approval with Positive Phase III Results

By Maggie McGuire Kuhl

Dyskinesia can be confusing. These involuntary movements can look like smooth tics or an uncoordinated dance, and may be part of how people think of Parkinson’s disease. But they are not part of the disease itself. Dyskinesia is a side effect of levodopa — the gold standard medication for Parkinson’s motor symptoms tremor and rigidity — and can significantly impact quality of life.

“If we could control dyskinesia, it would probably be the biggest change in terms of how we treat patients,” said Susan Bressman, MD, chair of the Department of Neurology at Beth Israel Medical Center in New York City, in an MJFF video on dyskinesia.

Physicians have long thought that dyskinesia arose with long-term use of levodopa, so patients may delay starting medication and live with disabling symptoms in an attempt to “save” the window of efficacy before dyskinesia begins. While more recent research is showing that levodopa-induced dyskinesia may be influenced more by stage of disease than length of medication use, a treatment for this side effect would be a game-changer for many patients.

Last week pharmaceutical company Adamas announced it is a step closer to such a therapy with positive findings from a Phase III study of extended-release amantadine. People who took the drug (called ADS-5102) showed a 23 percent reduction in dyskinesia compared to people who received a placebo.

To measure the effect of ADS-5102, researchers used the Unified Dyskinesia Rating Scale, a critical tool validated with funding from The Michael J. Fox Foundation. In 2012 MJFF supported a study of the scale to determine its utility in testing dyskinesia treatments. The validation of the rating scale shows it is a solid measure of a drug’s impact, and may help the U.S. Food and Drug Administration assess the utility of ADS-5102 when deciding on approval.

Interestingly, researchers used amantadine (the same compound as ADS-5102) to validate the rating scale. Amantadine is approved as a treatment for influenza, but physicians have used it treat dyskinesia. The drug blocks receptors of neurotransmitter glutamate, which scientists believe is involved in causing this side effect. This extended-release formulation could help control dyskinesia throughout the day.

Join us January 21 for our next Third Thursdays Webinar to learn more about dyskinesia, how physicians manage this medication side effect, and new therapies in development, including ADS-5102.

Source:: Fox Feed Blog

Five Promises I Made to Myself after My Parkinson’s Diagnosis

Peggy is an author, humorist and hat connoisseur who lives with Parkinson’s disease. She lives in Santa Fe, New Mexico, with her physicist husband and two literary and bird-friendly cats. She blogs at Heart, Healing & Humor: My Life with Parkinson’s Disease.

The first time my mortality called, I refused to answer. When the old crone rang me up again, I told her to buzz off; she had the wrong number.

The third time she called she did away with the niceties. Her message was brutally clear: “You have Parkinson’s disease.”

I responded, “There’s been a mistake. I know nothing about a disease called Parkinson’s. Leave me alone or I’ll report you to the local authorities!” (I had no idea what that meant, but it sounded menacing.)

But I couldn’t ignore the scary seeds she had planted in my mind. Surreptitiously, I visited three neurologists, assuming that they would tell me to ignore this hoax.

The most disconcerting thing is that the old biddy turned out to be right. I did indeed have PD! Was she one of Santa Fe’s many clairvoyants? Is it possible I had misjudged this situation?

After months of her nagging, I had an epiphany. Ms. Mortality was not the enemy, but actually a friend! Her diagnosis of Parkinson’s was a wake-up call. Her mantra of “Don’t postpone joy” resonated down to my core.

I am happy to report that I am taking my own advice. I had always wanted to have a Nancy Drew party, but felt I was too old. When I got PD, I thought “Who cares?” So last week my favorite chums donned their best frocks and we all played girl detective while enjoying a delicious ’50s style dinner from The Nancy Drew Cookbook. It was my best party ever.

More from the “Time is Short” list:

Don’t wait for Christmas to give presents.

I bestow gifts all year round, but during the holidays I am proactive and work for the cure. There are many excellent PD research groups. I have an affinity for The Michael J Fox Foundation, as Michael is short and funny, and so am I.

Be discreet about accepting invitations. Use the word NO frequently. Spend your time doing what you love.

I savor writing, quality time with my witty husband and having quiet lunches with dear friends. Easy traveling. Books.

Remember that little things mean a lot.

A couple of decades ago, my husband and I rescued two tiny kittens who had been dumped by the side of the road the day after Christmas. I hadn’t planned to keep them. But I did, and wrote three of my favorite books about them. Never has there been so much love and devotion in such small packages; for 18 years they were devoted friends who purred us through the ups and downs.

Maintain your creativity.

On those days when it is hard to get out of bed, don’t! Instead, picture yourself as Colette, who did most of her writing in bed. Whether you’re penning Gigi or writing cards, turn the experience on its head. Instead of feeling sorry for yourself, think of your day in bed as a step toward more originality.

Carpe Diem – Seize the Day.

Don’t dwell on the past and how wonderful you were — you are still spectacular. Don’t leap into the future:Treat the present as a present. It’s a call to cultivate your garden, gather your roses and your friends, hug your cat, turn off the TV and turn on Vivaldi, write a poem, learn French, read Auntie Mame and embrace its message to “live, live, live.”

Source:: Fox Feed Blog

Consumer Reports Recognizes MJFF’s Commitment to Efficiency

By Cheryl Blowers

Just in time for the holiday giving season, Consumer Reports, the world’s largest independent consumer-advocacy organization, has included The Michael J. Fox Foundation as one of its “best charities for your donations.”

Organizations were spotlighted after evaluating the rankings of three major nonprofit watchdogs: the BBB Wise Giving Alliance, Charity Navigator and CharityWatch. They looked at factors that included how much of an organization’s revenue goes toward its mission.

We often say that at MJFF, we’re obsessed with efficiency. We work tirelessly to identify and take smart risks on research with the most promise, seek to advance research faster and always keep patients at the center of every decision. Since our inception, MJFF has spent 89 of each dollar on research programs.

The Foundation is grateful to Consumer Reports for recognizing our commitment to speeding a cure with efficiency and accountability.

Looking to support our critical work with a year-end gift? Donate here.

Source:: Fox Feed Blog

Podcast: Parkinson’s Research Roundup – 2015 Year in Review

By Allyse Falce

2015 saw many advances in our understanding and treatment of Parkinson’s disease.

MJFF Senior Vice President of Research Programs Mark Frasier, PhD, spoke to MJFF Contributing Editor Dave Iverson about this year’s Parkinson’s disease research highlights.

“The pipeline for new treatments under development for Parkinson’s is the most robust I’ve ever seen,” said Frasier. “And I would predict that 2015 is just a step in the increased trajectory of our understanding of Parkinson’s disease and new treatments to be developed for Parkinson’s disease.”

Many therapies in development seek to improve patients’ lives, targeting both motor and non-motor symptoms.

“I think the awareness of the impact of these non-motor symptoms is higher than it’s ever been. Patients and neurologists have always been aware of these symptoms but from a research perspective I don’t think it was appreciated, particularly from those who were developing new treatments, that these are significant issues in Parkinson’s,” said Frasier.

Join us at our next Third Thursdays Webinar on December 17 to learn more about research developments from 2015.

Source:: Fox Feed Blog

Moose or Mouse: Seeing in Not Always Believing in Parkinson’s

Guest blogger Cheryl Kingston of Los Angeles, California has lived with Parkinson’s for 23 years and uses humor and creative writing to share her personal experiences.

Gnarly antlers swooped toward me. I lie in bed, frozen, paralyzed by a surge of fear and panic. This animal was not one of my local canyon-dwelling coyotes or menacing raccoons. No, this was a wild beast attempting to thrust into my bedroom toward me.

My knee-jerk reaction was to reach under my mattress to retrieve what I realized was a useless earthquake kit. Should I seal off the passage the beast was intending to pursue? Should I listen to my radio hoping to find a streaming emergency broadcast for coping with wild interlopers? Should I put my feet into my getaway Adidas running shoes?

I secured my flashlight. Alone and startled, reels of life’s moments stilled me. I reached for the bedside phone and with some sense of regaining control, dialed 911.

The dispatcher asked, “What’s the nature of your emergency?”

“I’ve got a large, eerie moose trying to get into my house,” I replied and followed with my address.

“A mouse, you say?” an incredulous voice responded.

“No! It’s a moose not a mouse,” I insisted despairingly.

Within nanoseconds sirens filled the canyon with a 2 a.m. wake-up call to my unsuspecting neighbors. A vigilant crowd gathered and as this reality drama played itself out, four stunning hulks in fireman uniforms, wearing protective gear, asked if they might enter.

The lead officer told me to describe the event while I gave him a tour of my home. He patiently recreated the harrowing intrusion to reassure me that the danger was gone. I respect that neither he nor the others chided me.

Convinced that the emergency was resolved, the fire chief remarked that they would file the requisite mouse-moose report.

Within moments I felt as if I were emerging from some state of amnesia. The disclosure of my new Parkinson’s drug side effects included a warning about hallucinations — experiences I never expected to become part of life with PD. These are altered states of sensory input and can include hearing voices and or sounds, seeing absent or non-existing people. Or moose.

Source:: Fox Feed Blog

News in Context: Pesticide in Milk Linked to Parkinson’s Disease

By Maggie McGuire Kuhl

We’ve long known that some environmental exposures, notably pesticides, are associated with increased risk of Parkinson’s disease (PD). A new study is getting much media attention for sharing findings that link milk consumption to PD in a male Hawaiian population most likely through dairy contamination with pesticides.

The study population is from the Honolulu-Asia Aging Study, which followed men from midlife. Many chose to donate their brains after death. This study, published in Neurology, looked at data on milk intake collected from 1965 to 1968 and then examined the donated brain tissue.

Researchers found that loss of neurons in the substantia nigra (part of the brain associated with Parkinson’s) was highest in people who did not smoke and who consumed greater amounts of milk. They also correlated milk intake to brain levels of a pesticide called heptachlor epoxide, which was found in the milk supply in Hawaii in the early 1980s.

We spoke to Caroline Tanner, MD, PhD, director of the Parkinson’s Disease Research Education and Clinical Center at the San Francisco Veteran’s Affairs Medical Center; professor in residence at the University of California, San Francisco; member of the MJFF Scientific Advisory Board; and an author on the paper.

The Michael J. Fox Foundation: This is a very valuable study population. What more can you tell us about them?

Dr. Caroline Tanner: It’s one of the few human populations where we have information on diet and lifestyle and environmental exposures starting in midlife. We also examined them regularly to determine who has Parkinson’s, and many of them have agreed to donate their brains when they die. So we have been able to compare information about lifestyle and work and diet to their brains and their clinical characteristics, including parkinsonism and cognitive impairment. It’s a really valuable population because we almost never have the opportunity to look at all that together.

MJFF: What did you find in this study connecting dairy intake and Parkinson’s disease?

Dr. Tanner: We saw that certain pesticides that are lipid-soluble were more common in the brains of people who had Parkinson’s disease. And we also were able to look in the same population and see that people who had a higher intake of dairy products had a higher risk of Parkinson’s disease. So we put this all together, and we saw a relationship between milk intake and neuronal loss in the substantia nigra even in people who prior to death didn’t have a diagnosis of Parkinson’s.

It suggests that this population could have had an exposure to milk that could have been contaminated, but we can’t definitely make that conclusion because we don’t have samples of the milk these people drank. We do know that there was quite a concern in Hawaii when they realized that the food being given to the cows was derived from these pesticide-exposed end products and that was concentrating in milk.

MJFF: This data on milk consumption was gathered in the 1960s and regulations on heptachlor were set in the 1980s. What do these findings mean for today’s milk supply?

Dr. Tanner: As these things are recognized as harmful, there is more regulation. But some are persistent in the environment, so people can still be exposed to them. One would assume exposure would progressively diminish over time, but some chemicals may take a longer period of time. So where does that leave us? I think that probably people drinking milk in the United States today are not going to be exposed to a high dose of pesticides.

However, there still are a lot of chemicals in our environment that are unregulated and not very much work trying to investigate the relationship between diet, lifestyle, and environmental exposures and risk of parkinsonism. So to the individual: alarm is not indicated, and moderate intake, possibly using organic products that have more attention to what kinds of things animals are eating, would be a reasonable and prudent course.

From the scientific perspective, I think this study highlights the importance of having information on environmental factors that can be looked at in understanding disease risk. If we don’t have that information, we can’t recognize the association, and we can’t have the kind of regulatory reactions that we need to protect human health.

MJFF: Some of your previous work showed a relationship between genetic variants and increased risk from pesticide exposure. What do we know about the genetic role in converting from environmental exposure to Parkinson’s disease?

Dr. Tanner: Generally what we found is that variants in genes that in one way or another affect the way the body metabolizes or detoxifies pesticides can lead to higher risk of disease. This hasn’t yet been looked at in the Honolulu population that’s published here, but work in other populations suggests that it’s a combination of your genetic susceptibility and your environmental exposure that can influence your risk of Parkinson’s disease.

In the majority of cases of Parkinson’s there’s not a single gene cause and there’s not a single environment cause. It’s a combination of those things together that determine people’s risk of disease.

MJFF: Why is it that smokers were at a lower risk of Parkinson’s despite their milk intake?

Dr. Tanner: We’ve long known that nicotine exposure has an inverse relationship to disease risk. In fact there is a study testing the protective effect of nicotine in people recently diagnosed with Parkinson’s. An important note, though, is that no one should take up smoking to avoid PD. This same Honolulu population actually showed us a similar inverse relationship with high levels of uric acid, and there is also a trial testing an agent to raise levels in people with PD. And while standardized measures of physical activity weren’t collected in this study, we know that, too, protects from Parkinson’s disease.

So we know there are harmful things like pesticides and protective things like exercise and there is genetic predisposition. It is a complex picture, and we need more studies like this to identify those factors.

Join our Fox Insight study to share lifestyle and health information that may teach researchers more about PD.

Source:: Fox Feed Blog

Video: Making Sense of Orthostatic Hypotension

By Maggie McGuire Kuhl

A common symptom of Parkinson’s disease, orthostatic hypotension is a sudden drop in blood pressure upon changing positions, such as moving from sitting to standing. This condition may cause lightheadedness and dizziness, which can result in passing out, fatigue and nausea. It could also contribute to gait instability and falls.

The National Organization for Rare Disorders produced this video to educate on the signs of neurogenic orthostatic hypotension (nOH) and available treatments. nOH is a subtype of orthostatic hypotension that occurs with neurological disorders. Orthostatic hypotension can also be caused by dehydration, heart problems and certain medications.

“I’s like to see an awareness of nOH, and not only that it exists, but there are ways of dealing with it,” says Jack Gernsheimer, who has Parkinson’s, says in the video.

on orthostatic hypotension in our Ask the MD blog.

Source:: Fox Feed Blog

How a Famous Author Is Raising Parkinson’s Research Awareness

By Allyse Falce

A new therapy in testing for people with Parkinson’s disease has garnered much attention, including from renowned author John Grisham.

On November 13, Grisham and Focused Ultrasound Foundation (FUSF) Chairman Neal Kassell, MD, spoke at TEDx Charlottesville about the potential of focused ultrasound to treat medical conditions such as Parkinson’s, Alzheimer’s and benign and malignant tumors.

This is a “revolutionary, noninvasive therapeutic technology that truly holds the promise to transform the treatment of a whole variety of serious medical disorders,” said Dr. Kassell. “But one of the most problematic barriers is lack of awareness.”

In a study funded by The Michael J. Fox Foundation and the FUSF, researchers are using an MRI (magnetic resonance imaging) machine to view images of a patient’s brain in real time while focusing more than 1,000 intersecting beams of ultrasound energy on specific tissue. The ultrasound energy heats and destroys abnormal cells associated with dyskinesia without harming adjacent tissue. This focused ultrasound procedure is also under investigation for tremor. No surgery, anesthesia or incisions are required, decreasing the risk of infection, hemorrhage, blot clots and accidental tissue damage.

An important note: While focused ultrasound requires no surgery and is more easily tolerated than alternatives such as deep brain stimulation, it is irreversible.

Grisham joined the FUSF board of directors six years ago after learning about the therapy’s promise. His goal is to raise awareness about the treatment.

“I do know that I have an audience, and I do know that I can tell a story, so I’ve written a book,” he said.

His newest piece of fiction, The Tumor, tells the story of a man diagnosed with a brain tumor and the opportunity that focused ultrasound affords his treatment.

Joining Dr. Kassell and Grisham onstage during the TEDx talk was Kimberly Spletter, the first person in the United States treated with focused ultrasound as part of the MJFF and FUSF-sponsored clinical trial.

“My life before my focused ultrasound procedure was completely different,” said Spletter, who had great difficulty walking and could no longer complete some of her favorite activities, like bike riding. She stood strong on the stage and shared how she had walked back to her room immediately after the procedure.

Spletter wrote a short essay for MJFF in September about her experience with the treatment.

Watch the entire TEDx talk.

Learn more about Grisham’s book.

Watch our webinar where Dr. Kassell spoke about focused ultrasound.

Source:: Fox Feed Blog

Tis the Season for the Team Fox Holiday Hub!

By Liz Diemer

The season of giving has arrived, and there’s no better time to inspire your community to join in helping to speed a cure for Parkinson’s.

Interested in organizing a festive fundraiser, but need some inspiration? Swing by the Team Fox Holiday Hub for some seasonal ideas and tips!

Here are a few of the offerings you’ll find within:

  • The Team Fox Winter Series Guide is comprised of 25+ different types of events that are all perfect for the winter season. From office holiday parties to neighborhood cookie exchanges, there’s something to engage Team Fox enthusiasts of all ages!
  • Check out our featured step-by-step holiday event guide for ideas, suggestions and fool-proof fundraising tips tailored to help you make the most of your holiday fundraising event.
  • If you are already planning to send out end of the year holiday cards to friends and family, why not include our pre-made holiday card insert to let them know how much a donation in support of Team Fox would mean to you!
  • Our Shop Fox is also stocked for the season with the latest trends in Team Fox/MJFF apparel, accessories and vintage items. Whether you do grab some gear to include as prizes at your event or simply check off some holiday shopping, there’s something for everyone!

Regardless of your holiday plans this season, visit the Team Fox Holiday Hub to learn more, check out our featured event guides and register today. Hosting an event? Don’t forget to share your progress and updates with us on Facebook, Twitter and Instagram using the hashtag #TeamFoxHoliday!

Source:: Fox Feed Blog